Wednesday Mar 08, 2023
Wednesday Mar 08, 2023
Wednesday Mar 08, 2023
Based on the professional peer-reviewed research, intersectionality can be understood as the phenomenon in which an individual person's social position relative to more than one socially defining characteristic, such as race, language, gender, disability, socioeconomic status, etc., come together to simultaneously impact a person's status in and access to society at large. Where a person fits into the world is a matter of multidimensional considerations.
When looking at the question of whether the current mechanisms of our system of government, and the behavioral rewards inherently built into them, truly serve the good of the people according to the will of the people and the rule of law, the importance of intersectionality to the accuracy of our analyses cannot be overstated. There is no “silver bullet” that will eliminate all of our social challenges with a single shot. Solving our complex, interconnected problems takes complex planning and execution.
Society is a complex system of inextricably intertwined considerations that all have to be accounted for in order for everyone's needs and rights to be equally met. There are no cutting corners, and we now have the computing power to stitch together effective systems of equity for all into the ways our government functions, if the technology is just used the right way. The fail-safes that can be built in and the audit trails that would be automatically created would prevent and capture any attempts at abuse just as a matter of normal functioning.
We aren't there yet, but the application of enterprise-class computing technologies to the delivery of publicly funded services is inevitable, and it will streamline a lot of inter- and intra-agency operations, trimming the administrative fat within a lot of State and local publicly funded programs. Eliminating human error and dishonesty from a public agency's administrative processes prevents episodes of noncompliance that puts the agency in legal jeopardy.
I've told the story in past posts of the case in which one of my students went for months without a needed piece of equipment ordered by his Occupational Therapist (OT) as an accommodation for his sensory needs in the classroom, which meant he was up and out of his seat disrupting the instruction, because of an interpersonal feud between two mean old ladies who hated each other in administration. One of the mean old ladies worked at the student's local school site in the office, processing purchase requisitions and submitting them to the school district's main office to be processed into purchase orders.
Now, this was back in the day and all of this was done using paper and the district's own internal courier service, commonly referred to as “brown mail,” because most things came in those big brown manila envelopes. There was no email. If things needed to move faster than brown mail, it was done via fax. So, context.
The other mean old lady in this situation worked in the accounting office at the district offices. I'm not exactly clear on the details of why they hated each other so much, but I do recall that it had something to do with either a green bean casserole or a three-bean salad – I can't remember which – at some kind of district holiday party. Like, maybe both of them brought the same thing and it turned into a feud over whose was better, or something? I don't entirely recall the details, I just remember it was something to do with beans and a holiday party and that it was totally dumb.
The mean old lady at the district offices would sit on the purchase requisitions submitted by the mean old lady at the school site just out of spite, without any regard for the people who had submitted the requisitions to the mean old lady at the school site or any students who may have been impacted by her behaviors. The mean old lady at the school site wasn't willing to call over to the mean old lady at the district offices to find out what had happened to her requisitions, so she'd become hostile with the school site staff who would ask her where their stuff was. They became afraid to ask her where their stuff was, and just took it as a given that the average purchase would take at least 60 to 90 days before it came in.
Computers don't do any of that! As many concerns as we have about computers processing things correctly, that comes down to how they are coded. They aren't going to fight with each other over three-bean salads at a Christmas party and then undermine each other professionally to the detriment of the constituents they are being paid by the taxpayers to serve.
So, knowing that the implementation of the technology is inevitable, our job as informed voters and taxpayers is to understand what that technology needs to be able to do in order to truly perform according to the principles of democracy and the rule of law. That technology must account for how intersectionality impacts every person, whether staff, vendor, or constituent, who must participate in the execution of the government's responsibilities to the people.
This brings me to a very specific issue within special education in the State of California that has affected way too many families in a detrimental way, which is the intersectionality of the African-American experience with special education in the public schools. This is an under-researched and poorly regulated aspect of our current modern society, here in California, and as the State seeks to shore up democracy in spite of the many forces presently working to undermine it, I believe this specific instance of intersectionality particularly deserves the State's attention.
I'm speaking specifically of the long-outdated and now inappropriate Larry P. requirement. To quote the State:
"The Larry P. Case"
In 1972 in the Larry P. case, the United States District Court for the Northern District of California found that African American students in the San Francisco Unified School District were being placed into classes for “Educably Mentally Retarded (EMR)” students in disproportionate numbers, based on criteria that relied primarily on the results of intelligence quotient (IQ) tests that were racially and/or culturally discriminatory and not validated for the purposes for which they were being used1. In 1979, the court permanently enjoined LEAs throughout California from using standardized intelligence tests2 for (1) the identification of African American students as EMR or its substantial equivalent or (2) placement of African American students into EMR classes or classes serving substantially the same functions3.
The court held that court approval would be required for the use of any standardized intelligence tests for African American students for the above purposes. The court laid out a state process for this.
The EMR category no longer exists. The court has never held hearings to determine the “substantial equivalent” of the EMR identification or placement, or whether IQ tests are appropriate for assessing African American students for identifications or placements other than the substantial equivalent of EMR. The state process to seek approval has not been invoked.
Although the law on assessment has evolved, as described above, the Larry P. injunction remains in place, and the court retains jurisdiction over its enforcement. The Larry P. injunction does not apply to tests that are not considered standardized intelligence tests.
1 Larry P. v. Riles, 343 F. Supp. 1306, 1315 (N.D. Cal. 1972).
2 The court defined a standardized intelligence test as one that result in a score purporting to measure intelligence, often described as “general intellectual functioning.” Larry P., 495 F. Supp. 926, 931 n. 1 (N.D. Cal. 1979), affirmed in part, reversed in part, 793 F.2d 969 (9th Cir. 1986).
3 Larry P., 495 F. Supp. at 989.
Here's what everybody needs to get, and which way too many school psychologists and other special education assessors in California's school districts do not: Larry P. only applies to norm-referenced intelligence quotient (IQ) tests that result in a full-scale IQ (FSIQ) score. It doesn't apply to the Southern California Ordinal Scales of Development (SCOSD) Cognition subtest. It doesn't apply to any standardized speech/language assessment measures. It has nothing to do with OT. It has nothing to do with measuring academic achievement using standardized assessment tools.
Unless the assessment measure is designed to produce an IQ score, Larry P. does not apply. But, I've now handled a half-dozen cases in the last couple of years in which the whole reason why the students' IEPs were poorly developed was because they'd been poorly assessed by people who didn't score any standardized measures for fear of violating Larry P. because they didn't actually understand the Larry P. rules. The professional development on this issue throughout the State is atrocious.
More to the point, the State needs to invoke its process to seek approval to now use the current, modern, unbiased IQ tests in the special education process, because the assessment failures caused by poorly trained cowards who don't have the sense to go onto Google and look up the rules themselves and/or push back against administrative supervisors steering them in a non-compliant direction are causing a cataclysm of disastrous consequences at the intersection of the African-American experience and childhood disability in the State's public schools. This just feeds these kids into the gaping maw of the School-to-Prison Pipeline.
I want to take it one more step further than that, though. I want to encourage more representation of the African-American community in special education assessment. I want to see more college students of color going into school psychology, speech/language pathology, OT, assistive technology, etc., so that they can be there to advocate from an informed, expert perspective within the system for the children from their own community who are at risk of being otherwise misunderstood by people who lack the perspective necessary to appreciate the long-lasting impacts of their assessment errors.
People who don't actually understand the rules can over-interpret them in an over-abundance of caution. They will not do more than what's actually been prohibited for fear of doing something they aren't supposed to, to the point that they're not doing what they are supposed to be doing. They go from one extreme to the other. In an effort to avoid committing a State-level Larry P. violation, they commit a violation of federal law by failing to appropriately assess in all areas of suspected disability according to the applicable professional standards and the instructions of the producers of the standardized measures used.
It's currently a “from-the-frying-pan-into-the-fire” situation for the State that is wrecking lives and creating special education violations left and right. The State is setting up its public schools to fail at this particularly significant intersection of social factors, at the same time that the State is seriously considering reparations to the African-American community here in the State.
I promise you that none of the assessors I've encountered in the last few years who have been committing these Larry P. violations are actually trying to be hurtful. None of them know what they're supposed to be doing and they're making dumb errors in judgment, often under pressure from authoritarian administrators who don't know an IQ test from a roll of toilet paper.
I'm advocating, here, for both the development and implementation of enterprise-class computing technologies that will automate as much of the public sector's administrative functions as possible according to the applicable regulations, including mandated timelines, as well as for the State to request the court to reverse Larry P. so that schools are no longer enjoined against using current, valid, appropriately normed IQ tests in the assessment of African-American children in California for special education purposes. These two things matter to each other.
Larry P. is no longer a solution, it's a problem. It's not that assessors couldn't work around it; it's that they don't know how to work around it and they commit more errors trying to than anything that could possibly go wrong actually using an IQ test on an African-American student in this modern day and age. Further, the specific ecological factors that contribute to the success of students who are impacted by the intersectionality of their disabilities with other traits that can affect their social standing, such as ethnicity, need to be understood as specific data points worthy of intense administrative and policy-making examination.
As a matter of civil rights and monitoring its own internal compliance with Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, one would hope that a public education agency would want to know if particular classes of students are somehow being under-served and need more attention from the adult decision-makers involved in their educational experiences. Who is monitoring each school district's compliance with Larry P., right now? Is that the job of each district's 504 Coordinator? How is Larry P. compliance in the field such an issue, still, after all of these years and, more to the point, why is it even still a requirement after all of these years?
Analyzing data from an enterprise-class computing solution regarding intersectionality among special education students would help public education agencies recognize trends of noncompliance and programming failures. This would include rampant Larry P. violations producing shoddy assessments that result in poorly crafted Individualized Educational Programs (IEPs) that fail to deliver appropriately ambitious educational benefits according to the current Free and Appropriate Public Education (FAPE) standard pursuant to the 2017 Endrew F. Supreme Court decision.
Issues of intersectionality can be captured by competent data analysis, which can be greatly facilitated by properly coded enterprise-class computing technologies, and used to ensure that all students, pursuant to Endrew F., receive an IEP appropriately ambitious in light of their unique, individual circumstances. A properly configured system would be spitting out reports detailing the instances of noncompliance to the inboxes of the key decision-makers so they could respond as quickly as possible.
Had such a system already been implemented, the Larry P. violations I've encountered all over the State over the last couple of years would have been caught among all the others I haven't encountered and either rectified or prevented altogether by the State realizing what a colossal disaster Larry P. has become in the field and executing the process outlined by the Court to put an end to it. Were the State monitoring the right data points, it would have realized that Larry P. needed to be ended a long time ago and that it causes infinitely more problems than it solves because it forces assessors to assess African-American students differently than everyone else, which is not equal access.
Frankly, this lack of equal access is more discriminatory than using an IQ test could ever possibly be and becomes even more so when the quality of the assessments are compromised because the assessors don't know how to comply with Larry P. and they jack up their entire evaluations in the process. Jacked up evaluations lead to jacked up IEPs, which lead to the denial of educational benefits and all the consequences that these children will experience over their lifetimes as a result of being deprived of a FAPE.
The people who make these kinds of errors will be among the first to engage in victim-blaming once these students end up in the justice system, acting like it was unavoidable and inevitable, because they can't recognize or accept the degree to which they had a hand in making it happen. The people who do it on purpose hide among the people who don't know what else to do, fueling the victim-blaming, which becomes part of our current, exhausting, ridiculous, ongoing culture wars.
I would rather see Larry P. ended so that it's no longer creating confusion among assessors in the field and technology implemented that will identify when things like this are going on so they can be stopped early on. I would much rather monitor digital data as a compliance watchdog as I get older than have to go in, one kid at a time, to hold the public education system accountable to its mandates under our democracy's rule of law. So long as there is transparency in how the system operates and all the real-time data, other than anything personally identifying, is accessible to the public to be analyzed for compliance failures, technology stands to enhance the functions of democracy. But, it all comes down to how its coded.
I expect that watchdogs and advocates in the future will spend more time analyzing system-generated data than necessarily representing individual students, and that a healthier partnership between the public sector and the citizenry can evolve in which the user feedback shared with system developers and operators can be used to enhance its functions and allow each agency to serve its mandated purposes in a compliant manner that is both cost-effective and substantively effective.
The more that social and behavioral science is integrated into the policies, procedures, and applied technologies in the public sector, the more effective and efficient they will be. The more integrated the technologies among all of the public agency stakeholders, the more cohesive the communications and execution of time-sensitive tasks. I see a future in which systemic violations, such as rampant Larry P. failures, will trigger an examination of the intersectionality of disability and other social factors, such as ethnicity, on compliance and help identify when something like getting rid of Larry P. needs to happen sooner rather than later.
I see this Larry P. mess as yet another compelling argument for the implementation of enterprise-class computing technologies within public education administration. I hope the State is listening.
Tuesday Feb 21, 2023
Tuesday Feb 21, 2023
Tuesday Feb 21, 2023
I'm long overdue to post new content to the KPS4Parents blog, podcast, and social media, but it's been a busy school year. The continuing fallout from COVID-related school closures that disrupted the educations of most children, and had even more profound effects on our learners with disabilities, has kept me busy.
It's one of these COVID-related cases that brings me back to the blog and podcast today, because after over two years of waiting for a complaint investigation to get done that was only supposed to take 180 days, the United States Department of Education (USDOE), through its Office for Civil Rights (OCR), finally concluded an investigation of Oxnard Union High School District (OUHSD) and how it handled its students with disabilities during COVID-related school closures. To say I and the student's family now feel vindicated is an understatement.
You can read OCR's findings and the resolution agreement that OUHSD entered into with OCR to resolve its violations by clicking here. I'm not going to belabor every little thing in those documents because they speak for themselves and you can read them at your own convenience, but I will summarize them, here. In short, not only did OCR find that the District violated my client's civil rights, it likely violated the rights of its other students with special needs by refusing, as policy, to provide any in-person disability-related supports and services during campus closures, even if they were necessary in order for the student to access learning.
At the beginning of the pandemic, when the schools were first closed down here in California, the Governor's office understood immediately that our special needs students were going to be disproportionately affected by the school closures. With the new budget during the summer of 2020, the Governor committed $1B to cover compensatory education costs for students with disabilities who lost educational benefits during the school closures because they couldn't access the disability-related supports they needed in order to learn.
Back in the Spring of 2020, right after the pandemic hit and the schools shut down, both the Governor and USDOE reminded the public education system that its legal obligations to its students with special needs had not changed in spite of the pandemic and that local education agencies should do everything possible to continue implementing services and supports to students with disabilities during campus closures. But, there was also that extra money set aside by the Governor to compensate students for learning they lost due to unavoidable losses of educational benefits and, presumably, if their local education agencies otherwise botched their pandemic response to the detriment of their kids with special needs.
I've been negotiating Informal Dispute Resolutions (IDRs) to claims like these ever since in-person learning resumed, and I'm still dealing with the residual effects of the school closures across my caseload. Which brings me back to this most recent OCR investigation outcome.
What OCR and OUHSD are now doing is working together to repair the harm done to all of the OUHSD students with disabilities at the time of the COVID-related school closures who did not get the services and supports they needed such that they are now owed compensatory education. This is a very big deal!
According to the Resolution Agreement entered into by the District with OCR, OUHSD must send letters to every potentially impacted student and offer a meeting to determine if any compensatory education is owed to them and, if so, document how it will be provided. OUHSD is not being left to its own devices to determine whether it has met each affected student's needs; OCR will be overseeing OUHSD's implementation of these remedies to make sure they're done correctly. OCR will provide the technical assistance to OUHSD to help it clean up this mess and set things straight.
In theory, my work here is done, other than to work with the family of the student for whom I'd filed the complaint to make sure she gets the compensatory education that she is now due. But, for all of the other OUHSD students and former students impacted by this outcome, I still have concerns.
None of the other affected students and their families knew about this complaint. They're going to get a letter in the mail that they weren't expecting with an offer to meet with the District to determine if their kids are owed any back-due educational services and not necessarily understand what it is, why they are getting it, or how important it is.
Today's post is about making sure that the other students who are impacted by this outcome get what they need and are due. I know that OCR will be working with the District to make sure that the families who avail themselves of the offer to meet regarding their possible compensatory education claims have a fair shot at getting the right stuff. I'm not as worried about those families.
The families I'm most worried about are the ones who don't understand English and/or their rights. We have a fair number of households in the District in which the parents may not be educated sufficiently to understand what any of this is about. Unless they actually take the meeting with the District to learn more, OCR is not in a position to help make sure their kids actually get what they need.
So, my goal with today's post is to make sure that all the affected OUHSD families are fully aware of what that letter inviting them to meet with the District to discuss compensatory education really means and that they take those meetings and get the remedies that are due to their children. We have to remember that we already paid taxes so these kids could get these services, and then that money was never spent on serving them appropriately during campus closures.
This is about belatedly delivering the services that had been previously purchased by the taxpayers but never actually delivered to their intended recipients. The only part of this that brings new costs into the picture is all of the extra work that will now have to be done to help these kids recoup lost learning and catch back up after having been deprived of what had already been paid for in the first place.
After all of the OUHSD students who were impacted by this outcome, my next concern after that is all of the other students throughout the County whose school districts also refused to provide in-person services during the COVID-related campus closures who were not similarly held accountable by their regulators. The California Department of Education (CDE) has done a shoddy job, in my experience, of addressing these exact same concerns in other area school districts.
None of the school districts in Ventura County, to my knowledge, provided in-person services to any students with disabilities during the campus closures. In fact, I fought tooth-and-nail throughout the period of campus closures with a number of school districts throughout the State to address these same concerns. This instant OCR complaint was just one of many efforts I made to protect my kiddos during campus closures.
One family was able to use their health insurance to get in-home ABA services so their child had 1:1 behavioral supports during distance learning, which was the only reason he was successful, but that was an isolated incident. Another family was able to negotiate a settlement agreement with their district to reimburse the parents for paying for a private aide to come to their house to support their child during distance learning, but that was, again, an isolated incident. Most of my students sat at home with their moms as their 1:1 aides, which either worked or didn't, depending on the student.
If you look back through the content I created for KPS4Parents during the COVID-related campus closures, you'll see a lot of what I published back then had to do with the mandates that special education and other disability-related services were required to continue without reductions in services and supports. It's nice to know that the United States of America has our students' backs on that point, but they can't investigate the case of every student with disabilities in America. It took over two years to investigate just this one, although systemic violations were uncovered in the course of it doing so.
I sincerely hope that the outcome of this investigation benefits not only the students of OUHSD who failed to receive appropriately ambitious educational benefits because of the COVID-related campus closures, but also similarly impacted students in all the other school districts that used the pandemic as an excuse to cut corners and not pay for services that were so seriously needed by so many students with disabilities. This outcome needs to impact more students with special needs than just those within the OUHSD attendance area. It needs to set an example.
I find myself frequently telling people that the measure of whether a society is civilized or not goes to how well it takes care of its most vulnerable members, and that special education law is the canary in the coalmine of American democracy. If we can't respect the civil rights of our children with disabilities, what does that say for the civil rights of the rest of us?
School districts are not for-profit private businesses; they are government agencies funded to execute the functions of our society for the benefit of the public. We should be able to trust our local government agencies, including our local school districts, to abide by the rule of law.
KPS4Parents is currently reaching out to various stakeholders in Ventura County to make sure that the other families affected by this outcome understand exactly what this is, how they are affected, and how to make sure their kids get what they actually need. If you are part of an affected family and need assistance with this process, KPS4Parents will do everything we can to support you, including putting you in touch with other advocates and attorneys if necessary to handle the sheer volume of families who may need this level of assistance.
If you are part of another organization or agency that also serves students with special needs in Ventura County and/or their families, and would like to help area families navigate this process, please contact us and we'll get back to you as soon as we possibly can. It's exciting to be part of the solution, but the work is just getting started and our agency can't do it all alone.
We're part of the larger community of loving, democracy-minded people who advocate for social justice issues. We need the help of our social justice partners to make sure all of these affected families are properly supported and served, and to help us generalize these remedies to benefit other similarly affected students in other communities. It takes a village, so I'm asking for the rest of the village to step up and help me help all of these other affected families, and for the families who are already experienced with this kind of stuff to help other families who might not be so savvy.
This is an exciting time for systemic change, and I want families of children with special needs to feel empowered by this and set the example on how to participate in our democracy at the local level in a meaningful and impactful way. Bottom line, screaming at school board meetings about their personal beliefs and feelings gets parents nowhere, but regulatory complaints filed to enforce the rule of law can be everything.
Tuesday Sep 27, 2022
Tuesday Sep 27, 2022
Tuesday Sep 27, 2022
To see the text transcription of this podcast, including links to content discussed, go to: https://kps4parents.org/interview-of-rose-griffin-slp-bcba.
Tuesday Aug 09, 2022
Tuesday Aug 09, 2022
Tuesday Aug 09, 2022
LAUSD Main Offices - Downtown Los Angeles
The school year hasn't even started yet and Los Angeles Unified School District (LAUSD), the second-largest school district in the country, has already hit the ground running with illegalities left and right, not the least of which is the systemic policy issue that I'm focusing on in today's post. It's hardly the only violation, but its a systemic one that stands to continue hurting a lot of children with disabilities, particularly our kiddos on the autism spectrum.
What I'm about to tell you would sound far-fetched if it was not for the fact that the United States is currently engaged in a soft civil war in which right-wing extremists are attempting to change us from a democratic republic to a ethno-religious dictatorship. The evidence indicates these decades-long plans were started at the local level in city councils, school districts, and various county agencies, then percolated upward into our federal agencies before culminating in the January 6, 2021 insurrection against our democratic republic.
The reality is that I've been dealing with these kinds of behaviors from local education agencies for the last 31 years, and there is no end in sight for many families in local education agencies as large as LAUSD. It's the Titanic, it's been on a direct course for an iceberg for decades, and it will collapse and sink under its own weight before too much longer at the rate it's currently going.
This is particularly the case as the pro-democracy backlash to recent fascist efforts to overthrow our system of government is gaining momentum as more and more high-ranking fascist individuals at the federal level face the consequences of their actions with the J6 Hearings and related Department of Justice (DOJ) investigations. When the example is finally set at the national level and all of those responsible for J6 are either behind bars or being pursued by the feds and Interpol after fleeing the country, the trickle-down of legal consequences to State and local government agencies that have been engaging in fascist practices all this time will be severe.
But, we're not there, yet. The only way to really get there is to make public what the heck is really going on so that taxpaying registered voters in Los Angeles can make informed decisions about the people they entrust with the responsibility of educating their children, particularly their children with disabilities. So, let me get into the actual issue to which I want to call immediate attention, that being LAUSD's unlawful and unethical method of conducting Functional Behavioral Assessments (FBAs), which it has implemented as a policy, district-wide, according to District personnel.
Title 34, Code of the Federal Regulations (34 CFR) Section 300.304 describes the parameters for how special education assessments are supposed to be conducted. 34 CFR Sec. 300.320(a)(4) mandates the application of the peer-reviewed research to the design and delivery of special education, which includes the assessment process. Taken together, these laws require that competent assessors acting within the scope of their qualifications conduct assessments according to the professional standards that apply to each of the various types of assessments being conducted, in conformity with the peer-reviewed research.
There is no standardized measure, like an IQ test, when conducting an FBA, though there are assessment tools and instruments that can help inform the process. Instead, the applicable science describes the types of critical thinking and lines of inquiry a properly trained behaviorist must apply when determining the function of a maladaptive behavior and the most appropriate ways of responding to it. The science used is referred to as Applied Behavioral Analysis (ABA).
ABA is not a special education service, per se. ABA is the science behind effective behavioral interventions. ABA services requires scientists to think independently in applying the known science to the unique facts of each individual person assessed. It's not a paint-by-numbers, one-size-fits-all measure. It's not psychometrics in the sense that norm-referenced standardized tests will be administered to the student. It requires more thought and higher-level critical thinking skills than that, and the people who are certified to do it must prove their abilities to function that way.
There are no formal criteria for FBAs, specifically, but they are based off the Functional Analysis (FA) procedures developed by Dr. Brian Iwata and his colleagues in their published research. While being certified as a Board Certified Behavior Analyst (BCBA) is supposed to confirm that a behavioral scientist is adequately qualified to analyze behavior, BCBA certification is not required in California for conducting FBAs in the special education context. Anyone who has gone to graduate school for a school psychologist credential should have theoretically been trained on ABA just as a part of their grad school education.
My master's degree is in educational psychology and I had to study ABA more than once during my higher education. It is not typically part of a special education teaching credential program, other than to mention that other professionals are available in the special education context to conduct FBAs and provide ABA-based behavioral interventions.
That is, except, in LAUSD, which is using special education teachers to conduct its FBAs. It will hire Non-Public Agencies (NPAs) that specialize in providing ABA services through and under the supervision of BCBAs, but it will not allow the BCBAs to actually conduct their own FBAs to inform their own Behavior Intervention Design (BID) services, which then compromises the quality of the Behavior Intervention Implementation (BII) services. This is a district policy, according to various LAUSD employees with whom I've been speaking about this since April, and they don't seem to understand why I have such an issue with it.
First, the 8th grade LAUSD student I'm currently representing in which this issue has come up has been "assessed" under this model since the 1st grade and he still has the same behavioral challenges today that he had in 1st grade. He's made no improvements and now he's over 6 feet tall. His toddler-like tantrums result in significant property destruction, which has only gotten worse as he's gotten smarter and bigger over time, and he puts himself and others at risk of injury when he throws them. Not only does LAUSD's method of conducting FBAs fail to comply with the applicable science and law, it does not work!
LAUSD's solution is to offer yet another illegal FBA conducted by an inexpert special education teacher who must then hand off their "data" to a BCBA who is then supposed to somehow magically engage in scientifically valid BID and supervise a Registered Behavior Technician (RBT) who is supposed to provide the BII in conformity with the plan designed by the BCBA. When I point out the epic failure of logic behind this practice to LAUSD personnel, I'm met with the Orwellian Doublespeak of corrupt District administrators and the blank stares of ineptitude and rote recitations of District policy from school-site personnel.
One school site administrator actually tried to get me to lie to the parent and trick him into doing something he otherwise was not inclined to do. I analyzed her behavior according to ABA standards based on what information I could gather and ultimately concluded that she's as stupid as she is corrupt; her behaviors were automatically reinforcing and externally reinforced by her employer, which appears to employ the dumbest people it can find in positions of authority well beyond their critical thinking abilities and professional skills so that they can be the clueless, easily manipulated henchmen of the mafiosos at the main office on Beaudry.
Basically, what we are dealing with here is science denialism and unconstitutional conduct on the part of public officials to the tune of hundreds of millions of taxpayer dollars. LAUSD is the government, regulated by the rule of law and answerable to its local constituency, but the people generally have no voice against this behemoth of a self-serving institution, which is why I'm talking about it, here.
LAUSD is long overdue for a reckoning regarding its systemic illegal conduct across all aspects of special education, and it's probably safe to say that if the District is willing to compromise its most vulnerable constituents, that being children with disabilities, it's likely equally comfortable violating everybody else's rights, as well. I can't speak to the other social justice issues in which the District might be in the wrong, but it has historically failed on the special education front ever since special education and related civil rights laws were first passed in the 1970s.
Disability-related civil rights law is truly the canary in the coal mine for American democracy. The measure of how civilized a society is can be determined by how well it takes care of its most vulnerable members, and children with disabilities are among the most vulnerable humans on Earth. If LAUSD is willing to treat children with disabilities this way, it's top administrators should probably swap out their dress suits for animal pelts so that their lack of civility is adequately conveyed. Otherwise, they're just wolves in sheep's clothing, preying our our most vulnerable children.
The Chanda Smith Consent Decree came after decades of unlawful special education conduct and was in place for decades thereafter in an effort to end the District's unlawful conduct, which it failed to do. The courts attempted to pull LAUSD out of the gutter with the consent decree, but LAUSD just pulled the courts into the gutter with it. An Independent Monitor was hired to oversee the consent decree until such time that LAUSD came into compliance with special education law, but that day never came.
Apparently, presuming that compliance would never happen, the Independent Monitor began engaging in equally corrupt behavior, assuming lifelong job security for so long as LAUSD continued to violate special education law and grifting the system by overpaying consultants who failed to make any kind of perceptible difference with respect to LAUSD's compliance. The Office of the Independent Monitor was shut down and the consent degree was closed out following an audit that revealed excessive unnecessary spending by the Independent Monitor that could not be related to the District's conformity with the consent decree.
Further, while it may be true that the District legitimately improved some of its special education programming, by no means had to come close to a reasonable degree of compliance, as evidenced by the number of families who have still had to file lawsuits to get services, and even that doesn't guarantee they'll get all of the right services for their children. Many get only some of the services their children need, making their IEPs as effective as watered-down penicillin in the face of a raging bacterial infection. For all the services they may actually get that they need, the absence of the other services they also need undermines any successes they may have in the areas in which they've actually received help.
Which circles back around to the question that serves as the title to today's post/podcast, which is, "Is LAUSD Run by a Fascist Mafia?" From the outside looking in, this seems to be a legitimate question.
Let's start with the fact that LAUSD hired computer coders to work with its in-house counsel decades ago to bastardize a piece of insurance software known as Welligent into its IEP software. As a result, LAUSD has basically bureaucratically obligated its school site personnel to break the law because of the software limitations of Welligent, or at least how it has been coded by the District, that fail to even offer compliant options to its users in many areas of special education.
For example, let's look at the assessment plan, redacted for privacy, that was offered to my current LAUSD student, which was generated from Welligent, and compare it to another redacted assessment plan for another student on my caseload in a different school district who also needed an FBA.
Example 1, below, is the assessment plan offered to my LAUSD student, and shows the FBA as an "alternative assessment" to be conducted by a special education teacher. "Alternative assessments" usually refer to non-traditional assessment measures or methods from those typically used in the place of standardized testing.
For example, using curriculum-based assessments in the classroom to gather informal data on actual classroom performance can be a more reliable method of assessing academic achievement than a standardized measure like the WJ-IV or the WIAT-4. None of this assessment plan makes sense with respect to the FBA.
Looking at the table of "standardized" testing from page 2 of this assessment plan, which is referenced by page 1, FBAs are not listed. Item 7 targets "Adaptive Behavior," but that goes more to independent living skills and self-care, like dressing, toileting, and navigating the school setting. FBAs do not fit that category and the LAUSD assessment plan has no category that FBAs would logically fit. This was a deliberate coding decision made in Welligent by the District that has absolutely nothing to do with adequately assessing children with special needs and offering them appropriate behavioral supports at school.
Example 2, below, shows a different student's assessment plan from a different school district. This assessment plan offers the student involved an FBA to be performed by the school psychologist in collaboration with a district behaviorist. This actually makes sense.
In this student's case, it turns out the special education teacher was the problem and she got reassigned to a different classroom. This student had gone without behavioral challenges until she was placed in this teacher's class, and the FBA made clear that the teacher was the one provoking the behaviors. Objectivity is one of the most critical aspects of science that must apply to special education assessments. Can you imagine if she had been trusted to conduct the FBA?
I can assure you the quality of the outcomes using appropriately qualified people who actually care makes all the difference in the world. Whereas our LAUSD student has historically been assessed according to plans virtually similar to Example 1, above, and has now gone for over six years with next to no improvements in his behaviors, our student from whose case Example 2 was taken is now thriving in school with no serious behavioral challenges of any kind.
To be clear, it's not like the student in Example 2 has never had issues with this school district. There were problems years ago when she was little that I had to deal with, but it had been smooth sailing until she ended up in that whacko teacher's classroom, last school year.
Because the student's behaviors were interfering with her learning, even though we suspected the teacher was likely the problem, we didn't go in accusing the teacher of anything. We simply asked for an FBA to get to the bottom of the behaviors and the next thing we knew the teacher was gone. The FBA report we got back was very well-written and explained the facts without demeaning the teacher or doing anything else unprofessional.
We hit a huge bump in the road that had the potential to go really badly, but the District in that student's case handled it professionally, compassionately, and responsibly. I've yet to see any of those qualities from anyone I've dealt with from LAUSD regarding my LAUSD student. The difference in handling is night and day, and I've caught both districts messing up before. The difference is that my other student was met with professionalism, while my LAUSD student is being met with science denialism and an utter abandonment of the rule of law.
It is this refusal to abide by science and law on the part of the second largest school district in the nation that raises the specter of fascism. It's all very "Marjorie Taylor Green-ish."
Consider that California has adopted the Common Core as its State Standards. The purpose of these standards is for our public schools in California to teach students how to use academic knowledge and skills to solve real-world problems, yet LAUSD doesn't use academic knowledge and skills to solve problems. It denies science and breaks the law.
How can people who deny science teach our kids to use science to solve problems? How can people who have abandoned the rule of law credibly teach social studies, particularly civics, and educate our kids to become knowledgeable participants in American democracy? How is this anything other than fascism and when are the feds going to do something about it?
I tried filing a complaint with the U.S. Department of Education, Office for Civil Rights (OCR), but it twisted my words into a narrower complaint than what I alleged and then declined to investigate its twisted version of my allegations, which is a first for OCR with me, I have to admit, and it makes me fear for our democracy even more, now.
If OCR is too intimidated by LAUSD to investigate such that it makes up lame excuses as to why it shouldn't have to, how does that not also suggest the presence of organized crime within LAUSD so large and expansive that even the feds won't touch it? DOJ is a little busy with the J6 investigations, but I suspect all of this stuff in inter-related as multiple spokes of a wheel-and-spoke conspiracy to overturn democracy in America.
Remember that Betsy DeVos tried to shut down OCR after she was appointed Secretary of Education by the 45th President until she had the snot sued out of her and subsequently reinstated it. She also admitted that her goal was to abolish USDOE as the Secretary of Education; she took the job with the specific intent of shutting down the entire agency from within.
How many people from the last administration continue to poison the well at USDOE? It's the same question Americans have to ask about every single federal agency, but as pointed out in the above linked-to article from The Root describing DeVos' desire to abolish USDOE altogether also describes the conference at which she recently shared her continued desire to shut down USDOE as teaching far-right parents how to build conservative-dominated school boards in their local communities, ban books, and a host of other undemocratic activities intended to deny the civil rights of children with disabilities, LGBTQ+ students, students of color, and students from other protected classes.
It's an anti-science, anti-democracy approach that includes anti-vax, anti-masking nut-jobs who are too dumb to know how dumb they are and/or are profoundly mentally ill, being manipulated by grifters like DeVos to vote against their own interests in favor of the interests of the grifters. It's the "have-nots" falling for the tricks of the "haves" who know the only way they can have way more than what they actually need is to make sure others don't have enough.
Today's post isn't about documenting how I've figured out a way to overcome whatever fascist mafia might control LAUSD. It's about exposing what I've witnessed and adding my voice and the voices of the LAUSD students who aren't getting what they need to the conversation in the hopes that it will spark others to also help hold LAUSD to account for its egregious violations of special education law.
I'm hoping that voters in LA will learn more about these issues, understand that special education social justice issues cuts across all other demographic groups, and no segment of society is safe for so long as our government is allowed to conduct itself in this way. If you are involved in any type of social justice issue in which LAUSD has engaged in discrimination and withheld services it is legally required to provide, consider getting involved with our Meetup Group, Social Justice Series - Everyday Local Democracy for All.
Our Meetup Group is not limited to people living within the LAUSD attendance area, but we certainly have Angeleños already in the Group. You can comment/DM us directly on Meetup or on our social media, or use our Contact Us form on our site with any questions/feedback. We don't have all the answers, but awareness is the first step to solving a problem, so we're starting there.
Friday Apr 29, 2022
Friday Apr 29, 2022
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 firstname.lastname@example.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.
Friday Apr 01, 2022
Friday Apr 01, 2022
Friday Apr 01, 2022
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
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
George Bailey 5:13
And, then, LED lights, you know, again, heavily used in the sensory, or special needs community …
Anne Zachry 5:22
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
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
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
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
George Bailey 6:21
… but if we learned that "X" works … and we will continue to do facts …
Anne Zachry 6:25
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
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
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
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
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
George Bailey 9:48
… there will be parents who read onto what we're our saying medical claims …
George Bailey 9:53
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
George Bailey 10:06
When a child's not sleeping with the entire family has suffered.
Anne Zachry 10:09
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
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
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
George Bailey 11:07
… but I used to be a foreign language instructor …
Anne Zachry 11:12
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
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
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
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
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
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
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
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
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
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
George Bailey 16:50
Because it was that bad.
Anne Zachry 16:52
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
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
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
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
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
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
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
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
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
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
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
Anne Zachry 22:30
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
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
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
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
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
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
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
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
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
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
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
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
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
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
George Bailey 32:20
… but it's a program that's been around since the 80s …
Anne Zachry 32:24
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
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
George Bailey 36:43
They work so hard.
Anne Zachry 36:45
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
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
George Bailey 38:43
But none of them … none of them love him like I love him.
Anne Zachry 38:46
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
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
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
George Bailey 39:32
So, big picture, you know, clinical Data, allows us to be able to predict.
Anne Zachry 39:37
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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 email@example.com 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.
Monday Mar 21, 2022
Monday Mar 21, 2022
Monday Mar 21, 2022
I'm not a Speech-Language Pathologist (SLP), so I'm not pretending to be an expert in the field of language processing. However, I rely on data from SLPs to inform my understanding of the communicative aspects of individual learners' respective abilities to process information and put it to constructive use.
I'm familiar enough with the concepts of language processing to have some informed questions about things I see in the world, every now and again. One of those things that just dawned on me most recently is the question of the relationship between pragmatic language processing and the popularity of reaction videos on YouTube.
For those of you who may be unfamiliar with reaction videos, they are videos made by YouTubers in which they react to videos that have become popular on YouTube, as evidenced by their respective number of views. So, to be clear, it's videos of people watching videos, usually for the first time, so that other people can watch their reactions.
The pay-off of watching reaction videos is to connect with the reactor's emotions through the reactor's body language, facial expression, word choice, and tone of voice. Of those four elements of language watched for by the audience in a reactor during a reaction video, three of them are pragmatic language.
Here is my hypothesis, but I need the SLPs in our audience to weigh in on this, too: You know how when you see something cool, your first impulse is to share it with somebody else and see how they react to it? It's like we only get one first time of experiencing something, but we want to relive it and the only way we can is to watch someone else experiencing it for the first time.
We ride the emotional roller coaster with each new first-timer we expose to the cool thing, relating to that other person's emotional response based on our own memories of enjoying our first time with whatever the cool thing is. It sounds like a weaker version of the behavior we otherwise refer to as addiction. The first time is always the best time and the experience can never be fully recaptured, but it can be approximated. It goes to show that all behaviors occur on a spectrum, including those we typically regard as extreme.
Art is the manipulation of media in order to convey emotion. It is often non-linguistic. Light, color, sound, shape, space, and a host of other things can be manipulated according to the laws of physics to evoke feelings and tell stories without words. Other forms are art use words as one more medium to enrich their creations, whether written, spoken, and/or sung.
One of the most popular forms of reaction videos on YouTube is devoted to music, specifically individual music videos. This involves the manipulation of visual and auditory information, only, as the other three senses cannot be actively engaged. The exception could be bone conduction of vibrations from the music in reactors wearing headphones or near loud speakers, creating proprioceptive input that goes to the sense of touch.
There are dozens of reaction videos apiece to a great many songs on YouTube. The number of people reacting times the number of songs to which reactions can be given creates exponential exposure for the artist of each original performance video. Reactors increase their own exposure on YouTube by riding on the coattails of artists who have millions of views of their content because of the quality of their art.
When people search YouTube for an original artist's work, all of the videos of people reacting to that artist's work will also come up in the search results. It's only natural that once one has viewed the original video to want to see it again through the eyes of someone else who has not seen it before and determine if they reached similar conclusions. People are not just looking to relive the experience, but also to be emotionally validated for feeling the ways they felt experiencing the original video for the first time.
Which then begs the questions, “Why do people get so sucked into these videos that are so heavily based on pragmatic language?” and “What are the implications of those facts for individuals who struggle with pragmatic language disorder or autism spectrum disorders that compromise their abilities to accurately read the facial expressions, body language, and tone of voice of others, and express themselves appropriately that way, themselves?”
This boils down to the research question of, “Can reaction videos be used to teach pragmatic language skills through video modeling to individuals who struggle with pragmatic language?” Only scientific research can tell. I'm all about encouraging such research, because now my inquiring mind wants to know.
One of the most powerful examples I can think of is the song, “My Mind,” performed live by Yebba at Sofar New York a few years ago. I have never heard anybody take people on such a hypnotic journey through sound in my life. Watching the reactors getting sucked into the song and becoming mesmerized is something to witness unto itself.
The impact of the reactions to her videos led to a compilation video of several reaction videos, that was basically the YouTube version of a meta-analysis, in which all of the reactors' reactions were displayed simultaneously, allowing viewers to see which parts of the song triggered the strongest reactions from the most reactors at once, like a living performance graph. Me analyzing that now is like the reflection, within the reflection, within the reflection … like, a metaphorical nautilus of analysis.
Another mesmerizing performance is “SOS” by Dimash Qudaibergan at the Slavic Bazaar, also from just a few years ago. Watching people who have never heard of him before reacting to Dimash singing "SOS" is something to behold. The first time you watch it yourself, you're immediate reaction is, “No! That can't be real. He's not human!” Then you watch it again in the reaction videos and see other people having their responses and you think, “Okay, it's not just me.”
Another one that requires additional inquiry is Chris Stapleton's “Tennessee Whiskey,” which doesn't even have a video. It's just the song with a still image of the album cover throughout, and yet it has over 500 million views on YouTube as of the time of this post. Watching people who have grown up on rap and hip-hop reacting to this song with surprise is a joy. They are the ones that give animated visual life to what is otherwise a largely auditory experience.
Anyone watching the Kodi Lee AGT audition reactions can see a handful of egocentric attention- and click-seekers suddenly reduced to puddles of humility over and over again. In an instant, Kodi's performance puts things into perspective and they get it. The clicks to watch the reaction become earned because it isn't a trick; these people are legitimately shook by what they see and that's what engages viewers of reaction videos.
In all of the above-referenced original videos, surprise is always a key element. In every reaction video that gets any kind of traction on YouTube, the reactors are shocked by what they are watching for the first time, and become emotionally engaged with the song and performer to which they are reacting. In all the instances cited above, there is an emotional story being told with which listeners can identify.
The reason the views of the original videos are so high in the first place is because the content is so emotionally engaging. People reacting to them for the clicks suddenly forget about the clicks, find themselves transported, and start talking about things that actually matter in the world. What often started out as an exercise in narcissism for pay can become a transformative experience that snaps a selfishly motivated YouTuber right out of it and puts things into proper perspective.
The sounds of the originally performed songs conform with their respective story lines in a way that takes the listener along for the emotional ride of each. With the exception of the Chris Stapleton example, above, reactors also have the benefit of watching the performance, which adds the benefit of facial expression and body language to the communication. Each song conveys a different emotional experience, but one must have intact pragmatic language skills to appreciate what makes each song so uniquely impactful that it inspires so many views and, thus, so many reaction videos.
And, I want to be clear that, even if the reactors are initially reacting to these specific videos only for their own marketing purposes, the ones that get the most traffic are the ones in which the reactors are caught off guard and have authentic responses, like crying or, in the case of Yebba, getting moved by the Holy Spirit in the middle of a song that is not about religion in any kind of way. The value in watching these reaction videos is seeing real people moved for real in the moment without the opportunity to fake it.
There's no way to conceal authentic surprise and awe, and those are the feelings viewers seem to be trying to experience by watching these reaction videos. What is it about the human psyche, then, that causes us to seek experiences that make us feel surprise and awe? Why do we want to witness miracles so badly? Why are the outliers who receive the most favorable public attention usually artists rather than scientists? Why do we tend to think data is boring and seek emotionally extreme experiences when data is practically useful and emotions often are not?
I don't have the answers. I just think this is a line of inquiry worth exploring. I'm curious to see if the evidence in support of video modeling as an instructional strategy could be applied to using reaction videos to teach pragmatic language skills to those who struggle with this area of language processing. Are there any communication researchers out there who might want to conduct some studies so inquiring minds can know?
Friday Feb 04, 2022
Friday Feb 04, 2022
Friday Feb 04, 2022
This is not a pleasant topic at all, so I want to start out this post/podcast with the understanding that I know this isn't a pleasant topic. That doesn't make it something to avoid, however. Problems aren't solved by pretending they don't exist.
For those of us who work with people with significant mental disabilities, fecal smearing, otherwise knows as “scatolia,” is a behavior we usually encounter among individuals with significant developmental disabilities and dementia. These behaviors often happen among these populations very frequently alongside other bowel-related health issues, such as constipation and encopresis. Simply put, constipation is poop not coming out and encopresis is poop not staying in.
The function of most fecal smearing behaviors appears to be communicative, especially among individuals who are nonverbal or have limited verbal abilities. In verbal individuals who engage in these behaviors, other significant mental impairments are still present, whether its the loss of mental functioning due to dementia; the failure of mental maturity due to developmental disabilities, such as intellectual disabilities and/or autism; or some forms of mental illness. Fecal throwing and smearing can also be seen among other primates. It's a primitive, infantile behavior.
When I was 20 years old, I worked in a nursing home providing hands-on care to medically fragile and/or mentally compromised elderly people. All of us knew who the poop-throwers were. The one on my wing was also an Evangelical Christian who would sing church hymns while throwing her poop at anyone passing by and accusing them of being the Devil. The exception was the visiting Evangelical pastor who would stop by to visit the patients every week, but he would come down the hallway singing a hymn at the top of his lungs so she would know it was him before he walked into her room, or he would get it, too.
I encountered fecal smearing behaviors once again when I finished my undergraduate degree and started working as a job coach in the community with adults challenged by developmental disabilities. One of the young men on my caseload was a fairly capable individual with autism who, in spite of his many attributes that made him employable to bus tables, serve drinks, and perform general maintenance in a restaurant, would engage in fecal smearing whenever someone made him upset. What had started as a behavior when he was younger with less language abilities had become a deeply entrenched learned behavior that followed him into adulthood long after he had developed completely intact verbal communication skills.
The differences between these two examples from my own life were important to note. In the nursing home, the woman on my wing with fecal throwing behaviors was kept on laxatives so that her feces wasn't solid enough to hold in her hand for throwing. Cleaning up bedpans was infinitely less work and trauma than jumping into the hazmat shower fully clothed and going home in scrubs from the supply closet because our own clothes had been ruined.
By comparison, the young man who struggled to hold onto a job and a group home placement because of this behavior was successfully broken of the habit through Applied Behavioral Analysis (ABA), Cognitive Behavioral Therapy (CBT), and psychotropic medication management to address anxiety and depression. Because he was verbal, he was able to talk with his therapist about the feelings he was having when he engaged in these behaviors and we were able to come up with a plan that helped him deal with those feelings appropriately, eventually extinguishing the scatolia altogether. He's been employed every time I've encountered him since, mostly in the community eating at the restaurants where he has worked.
What we discovered based on what he was telling us is that, historically, he had found himself in situations where he couldn't tell people what he was thinking for lack of language and, later, as the language started coming on, because he was afraid to complain about certain things for fear of retaliation or punishment. The degree to which he was correct in his perceptions about those past experiences is not as important as the fact that he was afraid to say anything with words, but he could express himself non-verbally through fecal smearing.
Fecal smearing behaviors tend to orient around protest, disagreement, and retaliation, based on what little research has been conducted on the topic so far. Most of the available research comes from mental institutions and long-term care facilities. I could find no research about fecal smearing happening in the general community, though such research may exist and I just couldn't find it. So much of the research is hidden behind paywalls that it's not accessible to everyday people, which is a topic of discussion all to itself for another time.
I brought this subject up in my book club last night (we're currently reading The Gifts of Imperfection: Let Go of Who You Think You're Supposed to Be and Embrace Who You Are, by Brené Brown, PhD, LMSW). One of the other club members shared that her home had been broken into years ago and robbed. The robbers also pooped on her wooden floors, ruining the finish, and she had to wait for a year-and-a-half to have the time and money to refinish her floors, with the damaged spot where the poop had been, serving as a daily reminder of the sense of violation she had experienced. Now that I think about it, the same thing happened to my grandparents in the 1990s while they were on an RV trip, only the poop was on their walls.
My book club friend stated the police officers who had responded to the call advised her that this was a common behavior witnessed among break-in robberies like hers. Law enforcement may be a better source of information about the prevalence of fecal smearing in the general community, which goes to the degree to which we have delegated the responsibilities of our mental health agencies to law enforcement. Behavioral researchers should look there for data about the frequency with which these incidents occur and how they are addressed.
Needless to say, there was no scholarly research I could find that was specific to the fecal smearing behaviors that happened during the Insurrection of January 6, 2021, at the Capitol of the United States of America. Only official records from the government and reports in the media capture the incident. I'm quoting the Trial Memorandum of the U.S. House of Representatives from the second impeachment proceedings against the 45th president of the United States, here:
Once inside, insurrectionists desecrated and vandalized the Capitol. They ransacked Congressional Leadership offices—breaking windows and furniture, and stealing electronics and other sensitive material. They left bullet marks in the walls, looted art, smeared feces in hallways,and destroyed monuments … [Emphasis added.]
This has been bothering me ever since it was first reported shortly after the Insurrection that fecal smearing had occurred during this incident as well. Based on what I already know about fecal smearing behaviors, what that tells me is that at least one person with profound disabilities was among the Insurrectionists.
Based on the other overt behaviors of the Insurrectionists, it's safe to say that America's mental health crisis reached an apex of sorts, though it isn't done showing itself, yet, based on the continuing domestic terrorism threats we all still face. It's an Extinction Burst of a sort, and one we cannot afford to reinforce. These individuals are seeking reinforcement for behaviors that were once rewarded and escalating their behaviors when the rewards are not forthcoming.
I think they're all cries for help, but the behaviors are so off-putting to most other people that they are disinclined to help and eager to ostracize anyone engaging in them. I think ostracizing these people helps the rest of us avoid the unpleasantness of dealing with these behaviors, but it's not a democratic response, much less an ethical one, We need a plan as a people on how to solve these problems, not punish people for having them. I'm not saying that people who commit crimes shouldn't pay for them. I'm saying that the causes of criminal behaviors have to be addressed so they don't happen in the first place. There is way too much money being made on incarcerating Americans instead of helping them.
The bigger concern for me, these days, though, is how many other people in positions of power actually understand the severity of our nation's mental health crisis and choose to exploit these individuals rather than meet their needs, such as the 45th president of the United States, for example. Protest, disagreement, and retaliation are the usual communicative functions of fecal smearing, and the Insurrection-related fecal smearing doesn't appear to be different in that regard. Everyone involved in the Insurrection was there to protest, disagree, and retaliate. What this specific form of communication tells us is that the people who engaged in it felt desperate enough to express their feelings through these actions rather than words, as if words had failed them and/or they didn't feel safe to use them.
When people are mentally impaired and don't fully understand everything going on around them, they can easily become confused, misled, and manipulated by others. They are often aware when others are mistreating them even if they don't fully understand the hows and whys. They know when they find themselves in a disadvantaged situation and will harbor valid resentments about it, but they often don't know who did what to make it happen, much less what to do to make things better.
When you have a right to be angry but you don't know how to get out of the situation, and no one is stepping up to help you, it's easy to become angry at everyone. You feel like the whole world is against you and there's nothing you can do. At that point, you default to the highest stage of social emotional development you've completely mastered, which may be well below your chronological age depending on the degree to which your social emotional development was healthy or not. Once someone becomes so overwhelmed emotionally in the absence of a solution that they start freaking out, very childlike – even infantile – behaviors are likely to ensue.
In the name of “liberty” and “freedom,” we've absolved ourselves of any responsibilities for the welfare of our neighbors. Personal liberty becomes confused with narcissism. People pay lip service to the ideals of the Constitution while exploiting their neighbors for financial gain. Money is an imaginary construct that many people value more than human life.
Many of these same people claim to be true believers in Christ, effectively singing church hymns as they sling their poo at everyone else. I don't recall any part of the New Testament encouraging that kind of behavior, but religious scholars who have studied the texts more closely than I have are welcome to correct me if I'm wrong.
Most of us understand that the people who got sucked into the 45th president's own mental health crisis are also not well, but they also account for approximately one-third of our population. That makes them a dangerous minority that has now grown into a domestic terrorism problem. It puts the assertions by the majority of Muslims around the world that Islam is not a religion of violence into context, now that we've got our own violent religious radicals here at home calling themselves Christians.
The inextricable intertwining of religion and mental health problems in societies is yet another topic for a separate conversation, but I have to point out that there are many responsible faith leaders struggling to lead as many of their congregationalists abandon the teachings of Christ to follow every wolf in sheep's clothing that steps into their path. American commercialism and its own brand of capitalism have created a competitive mindset about everything in our culture.
It's “My high school football team is going to crush your high school football team.” It's, “My church is made up of the chosen and all the other churches are full of people going to Hell.” It's, “My neighborhood is the best and everyone else lives in a dump.” Where is this narcissistic drive to be “better” than everyone else coming from in a society that's supposed to be democratic? Why do we feel driven to create a caste of “losers” to make ourselves feel like “winners”? How does hurting other people make someone a “winner”?
People have developed brand loyalties around things that aren't actually brands. American consumerism and its obscene obsession with the pursuit of material wealth has grossly undermined the uniform message of every great faith. Wanting more than what one needs while others go without contradicts every pious teaching of every great religious leader the world has ever remembered. We're all supposed to be collaborating with each other, not competing with each other, to survive as a species.
Raising children from birth under conditions that deprive them of developmentally necessary opportunities to reach adulthood physically, mentally, emotionally, and spiritually intact, is an uphill battle. The science is clear that the type of family support system an individual has is irrelevant; what matters is whether they have any type of support system at all.
Children growing up in homeless shelters with after school tutoring, social services, higher education and job placement services for parents, etc., remain as academically intrinsically motivated as children living in traditional family homes with access to resources. The gender identity and sexual orientations of parents have zero bearing on the quality of their parenting. Parenting becomes poor when it fails to nurture childhood development, regardless of the gender or orientation of the parent.
What we can safely deduce from witnessing current events as it relates to the known science is that being raised in economic extremes, whether extreme poverty or extreme wealth, deprives children of developmental opportunities that undermine their mental, emotional, and communicative growth. Extremely wealthy children are at risk of never learning how to do anything for themselves and will implode the minute they have to deal with serious life challenges. Extremely poor children are at risk of malnutrition, homelessness, and other hardships that make mere survival the priority without the opportunities to work on any other part of their development.
As the middle class in America continues to disappear, we're at risk of more and more people ending up at one economic extreme or the other and their children growing up thinking that humanity is truly divided as a matter of nature into two classes: the “haves” and the “have nots.” If that's all they see growing up, the divide becomes a hard and fast expected part of society. What do you think happens to a society that is made up entirely of people who failed to reach developmental maturity? It goes Lord of the Flies pretty quickly, after that.
In my ever-worried imagination, under such circumstances, humans will return to the trees if we survive as a species at all. I keep thinking, “Maybe the bonobos will have a better go at sentience than we did.” It makes me want to teach them sign language just so I can tell them all the mistakes we've made and what to avoid. The first thing I'll teach them is, “Use your words, not your poop.”
Returning the present issue of poop-smeared threats to our democracy wrapped in Confederate flags, I have a theory about one particular aspect of the problem that I haven't seen discussed in the news about the Select Committee's investigation into the Insurrection of January 6, 2021. In my line of work, the Americans with Disabilities Act and Section 504 of the Rehabilitation Act come up quite frequently. When I see things that do not appear to conform with their requirements, they jump out at me.
Given that were clearly dealing with people struggling with mental disabilities of one type or another, and given that social media has been instrumental in feeding them misinformation while giving them the tools to organize, it appears to me that the social media algorithms are not coded in a manner that reasonably accommodates users with the types of mental disabilities that make them vulnerable to misinformation and recruiting tactics of foreign adversaries and domestic terrorists.
If anything, social media's absence of reasonable accommodations in its coding for users with these types of mental issues is creating more domestic terrorists than we already had in the first place, suddenly taking them from the fringes of our society to a sizable, dangerous minority of violent people bent on overthrowing the government. In the absence of effective mental health interventions, the manipulators swooped in and weaponized our own neglected mentally impaired citizens against us.
What we don't take care of will take care of us. That's the whole reason that “being careful” is so important. “Being careful” isn't about avoiding problems, it's about being full of care. Being caring means being responsible for your community as well as yourself and your immediate loved ones. It takes a village, as they say, but if you neglect your village, you cease to be part of it.
We're all different for a reason. Whether you're a person of faith and see it as a component of our Creator's Great Plan or you're a secularist who sees it as a function of nature and evolution, or you're like me and think that nature and evolution are parts of the Creator's Great Plan, it's an obvious fact that we're all meant to be different by design.
The failure to appreciate the role that diversity serves for the balance of everything has led to efforts by a few unstable individuals who manage to acquire power and try to remake humanity over into a monolith, casting out those who, by design, cannot conform to their invented social hierarchies. This is the essence of discrimination. It's what causes people with disabilities to be regarded as less than human.
Anyone who is discriminated against for any other reason should be empathetic to the discrimination experienced by people with mental disabilities that affect their behaviors, but our knee-jerk reaction is to be repulsed by the most extreme behaviors in which we see these people behave. These behaviors, while often intolerable and highly inappropriate, are still cries for help, we need to see them that way, and we need to collectively demand our elected officials to enforce the ADA and Section 504 when it comes to social media algorithms.
My theory is that, if we use the existing language of the ADA and, where applicable, Section 504, to compel social media platforms to stop preying on the weakest minds among us, it will not only create jobs for coders knowledgeable of the law, but also enforcement officials knowledgeable of the code. Rather than looking at the daunting task of coding the Code into social media platforms as an insurmountable challenge, it should be seen as a significant step towards true democracy that creates desperately needed jobs.
The solution would solve more than one significant problem in this country and serve as an example of adult-level problem-solving for the rest of the world. Marketing research tells us that customer loyalty is greater after a vendor has had to work with a customer to solve a problem than if there was never any problem at all. It's not a source of shame for America to trip over its own feet and experience growing pains as it sheds the hypocrisy and anti-democratic practices of the past; what makes it shameful or not is how we respond.
If we can bounce back from the threats our democracy if facing right now with science across the board in every domain of need, including our nation's ongoing mental health crisis, and enforce the ADA and, where appropriate, Section 504, on social media platforms, no additional regulations are necessarily needed. If any other regulations of social media become necessary above and beyond that, so long as the First Amendment is still protected while also preventing troubled people from getting sucked down the rabbit holes of conspiracy theories, we'll redeem ourselves in the eyes of the world. At least, that's my theory.
Saturday Jan 15, 2022
Saturday Jan 15, 2022
Saturday Jan 15, 2022
On January 13, 2022, after staying up late to finish my last post/podcast, I woke up to find a message in my inbox from the CAPCAA listserv that included a very comprehensive-looking report published by a group referring to itself as "The Office of Administrative Hearings Special Education Task Force," with the email address of firstname.lastname@example.org. The members of this task force are not identified in the report. The report identifies its authors as follows:
Authors/Contributors: This accountability report is provided by the Office for Administrative Hearings Special Education Task Force, a coalition of concerned attorneys, advocates and parents. Many of these contributors conducted research, collected and organized the information, and assisted in the writing of this report.Bias, Noncompliance and Misconduct In Special Education Due Process: An Accountability Report on the California Office of Administrative Hearings Special Education Division, January 2022
Given the degree of retaliation that anybody calling out the California Office of Administrative Hearings (OAH) could easily face in the current anti-democratic climate of American politics, these days, I can't say I'm entirely surprised that the individuals responsible for this report have not named themselves in it. That could be really a good way to find some "good ol' boys" burning crosses in their yards and planting pipe bombs in their hedges on behalf of some tax-fattened, suit-wearing carpetbaggers.
So, I can't discount the report for lack of identified authors. That leaves nothing but the content of the report with which to judge its legitimacy, but that's almost better. It's like a blind audition on The Voice; it doesn't matter what you look like if you have a good voice. What you have to say and how you say it matters more than what your name is or what you look like. So, that's how I'm looking at this report.
In these troubling times, I'm willing to accept verifiable facts from anonymous authors truly fearing for their own safety if they dare to speak the truth. I will not accept unverifiable assertions being openly spewed by people saying whatever will get them attention. So, let's examine the assertions being made by this report.
This Task Force's report follows a professional format for organization and presentation of its information, but it's not a legal brief or scientific paper. Not every assertion is supported by black-and-white evidence, but the assertions not supported by evidence are nonetheless consistent with those assertions that are supported by evidence.
Additionally, because I work extensively in the very areas of concern targeted by this report, all of it rings true with the experiences that I've lived as a professional over the period of time discussed in this report. That which is not outright supported by evidence in this report is nonetheless credible to me given the evidence that is presented and what I already know to be true from real-life experience.
While anecdotal accounts were added to the report to bolster the authors' positions, the identity of those offering these accounts are unknown, so verifying them is impossible. Again, concerns about retaliation and privacy are legitimate, so I don't want to discount the privacy concerns of the authors, but one of the first rules of proving the veracity of a document is authenticating its content with its authors. That's just a basic rule of evidence. At some point, for this document to be taken seriously by regulators and/or legislators, its authors will have to reveal themselves.
Putting aside the authorship issues for the moment and delving into the actual content of this report, what this report is basically asserting is that OAH, which is a division of the California Department of General Services (DGS), is organizationally compromised relative to its obligations to try special education cases pursuant to the Individuals with Disabilities Education Act (IDEA). The report supports these arguments with references to a collection of publicly available documents.
These arguments appear sound and supported by credible evidence, in my opinion. Of particular note to me were its references to the November 15, 2021 study conducted by CDE titled, California Special Education Governance and Accountability Study, as well as news that the courts finally resolved the issue of continued distance learning for medically vulnerable children on IEPs. This latter issue affects one of our families and I've been waiting to hear about this situation.
The Task Force's assertions in its report are also consistent with my experiences dealing with OAH since it took over the hearings in 2005. In fact, I first became a paralegal in 2005 and witnessed the very shenanigans reported by the Task Force with the change-over from the Special Education Hearing Office (SEHO) to OAH that same year. It was a dumpster fire inside of a clown car that had crashed into a train wreck, to put it mildly.
OAH underbid SEHO in terms of the costs of conducting special education mediations and hearings by failing to include the costs of administrative support and sending mediators and judges around the State to handle each case in its local community, which allowed OAH to come under SEHO's bid by several million dollars, as memory serves. The moment it opened its doors for business, it was already millions of dollars over-budget from what it had bid to get the business from SEHO.
The quality of the judges from OAH was atrocious out of the gate. One then-new judge went down in California special education parent/student legal history for the angrily and stupidly stated words, "Ms. [Attorney], what does autism have to do with behavior!?!"
When you have people who have no idea what anybody is talking about deciding the futures of children who have no voice of their own in the process, those of us who are trying to protect these children become almost as powerless as the children we're trying to protect. We were, and continue to be, faced with people entrusted with responsibilities that are clearly light years beyond their actual skills and knowledge, and the authorities and powers that go with those responsibilities.
What is the point of having the rule of law if the people responsible for enforcing it are personally incentivized to break it or are otherwise too dumb to know how to enforce it? We're paying these people to implement the regulations, not to invent excuses as to why they don't have to and bully the rest of us if we dare to question them.
I've been saying for the last 30+ years that special education issues are civil rights issues, and if our babies aren't truly protected, then none of us really are. The national political landscape appears to support my conclusions, not that I'm happy to be right about that. Marginalized groups with specifically identified protected rights are always the first ones targeted by fascists, so special education is really a "canary in the coal mine" when it comes to American democracy. Clearly, we're not doing that well and this Task Force is seeing a lot of the same things I'm seeing.
Regardless of the authorship issue, which I suspect will be resolved in due time, the evidence cited in this report and the consistency of what it describes with what I live and breathe everyday inclines me to treat it as credible, though if anyone can find an inaccurate assertion in it, please post a comment and let me know. At minimum, another federal investigation is warranted based on this report, but I don't know that going to the U.S. Department of Education's Office for Civil Rights (OCR) is the right way to go, now.
As the report discloses, there was already an OCR investigation in 2014 of the California Department of Education (CDE) as it pertains to making its hearings accessible to individuals with disabilities. I won't repeat the anecdotal account of what that was all about, here; you can read it yourself in the report. But, I warn you, it's upsetting. I wish I could say it was too outlandish to be true, but it sounds just about right for OAH and CDE, based on my own experiences.
Last year, just to give you an example from my own caseload, I filed a compliance complaint with CDE against a local school district for failing to implement all of a student's IEP during the pandemic-related shutdown. The most critical element of the complaint was the district's failure to provide in-person 1:1 aide services, as required by the child's IEP.
Instead, the district put the aide for this non-verbal, inattentive, prompt-dependent child with autism on Zoom, requiring the child's mother to be the in-person aide helping her child access Zoom, constantly cueing him attend to the online instruction, and prompting him through all of his work tasks to completion. The aide could only sit there, staring at them through the screen, completely useless ... at taxpayer expense.
The aide was willing to provide in-person support and the non-public agency (NPA) that employed the aide was ready to send her to the student's house in a mask for in-person services during distance learning, but the district wouldn't permit any in-person services during shutdown. This single parent ended up selling her condo and moving, with her children, in with family friends, in no small part because she couldn't work a paid job while sitting at home serving as the free aide for her child with special needs throughout each school day while the paid aide sat in her own home on Zoom, unable to do her actual job.
This was a blatant violation of State and federal law that the district kept blaming on the county's health department. I challenge anybody to find a legal authority that gives a county health department the authority to tell a school district that it doesn't have to abide by the IDEA. After attempting to get the district to do the right thing by way of written correspondence and the IEP process to no avail, I filed a regulatory complaint with CDE.
CDE opened an investigation based on what I alleged through its complaint intake unit, but then the investigator subsequently assigned to the complaint materially altered the nature of the investigation and cited the district for a different violation of the law than what I had originally alleged, and failed to issue a finding regarding the original allegation I'd made about the aide. The investigator's findings then went to yet another unit within CDE that developed the order for corrective actions, which included compensatory special education instruction for lost service minutes, but it was silent regarding aide support during those compensatory services.
Think about this for a minute. I alleged in my complaint that the district failed to provide aide support during distance learning. The intake unit opened an investigation in response to my complaint based on the allegation of the district's failure to implement the IEP as written, specifically with regard to 1:1 aide support. The investigator found that the district failed to implement all of the instructional minutes in the IEP, but issued no finding regarding the 1:1 aide support. The corrective actions unit ordered compensatory instruction to make up for lost service minutes, but there was no mention of aide support.
Once corrective actions have been ordered by CDE and its findings are sent out to the parties, the offending education agency has to provide proof of corrective actions to yet another unit of CDE. When I called that unit to get clarification as to whether the compensatory service minutes were supposed to include the 1:1 aide support called for by the IEP, that unit's response was, "Yes."
The offending district's attorneys (definitely of the Rudy Guilliani/Syndey Powell variety), however, said, "No." They then tried to fight with CDE over whether or not the compensatory service minutes had to include the same 1:1 aide support the student required throughout the school day in every other instructional setting, as per his IEP, likely billing the district by the hour the whole time.
What ensued turned into an internal feud within CDE. The unit at CDE responsible for collecting proof of corrective action from the district insisted that, because the IEP called for 1:1 aide support during any and all instruction, it was understood that 1:1 aide support also had to be provided during the compensatory services ordered. But, not everybody involved with the investigation at CDE agreed.
What I came to suspect was that the investigator and legal department at CDE had deliberately steered my complaint away from its original allegations for presumably fiscal and/or political reasons. It certainly had nothing to do with CDE abiding by its obligations or making the district comply with the law. It had absolutely nothing to do with protecting the educational and civil rights of a little boy with autism who can barely talk and needs an aide to access his education.
Reading through this Task Force's report, I'm now seeing that experience again through new eyes. The argument the CDE is fiscally motivated to find it does nothing wrong and neither do its districts, regardless of the facts, as asserted by the Task Force, resonates with me as true.
Another compelling argument asserted by this report that also rings true for me is that DGS exists for the purpose of cutting costs, not ensuring the State's compliance with federal mandates or protecting the rights of citizens. The report further argues that, as an integral part of DGS, OAH also exists for no reason other than to control costs and not to protect the rights of California's citizens. As such, the Special Education division of OAH is not organized in a manner consistent with the requirements of the IDEA that special education hearings and mediations be conducted by impartial parties whose only function is to protect the educational and civil rights of students with disabilities.
A State employee who is being told their primary function is to save money should not be in charge of making sure the State abides by the IDEA. It's an outright conflict of interest, which this Task Force asserts in its report. This isn't just a philosophical assertion; it's a regulatory requirement. The IDEA requires education agencies to design and implement individualized programs of instruction that confer appropriately ambitious educational benefits upon each student according to his/her/their unique circumstances, regardless of cost.
A State agency that exists to cut costs should not be making programming decisions in situations in which it is unlawful for cost considerations to be used to determine who will get what. That, to me, explains a lot of the hyper-Republicanism (in the present-day fascist sense of the term, not the former "Party of Lincoln" sense of it) going on in California's special education system.
And, I'm willing to go out on a limb and say that, back in 2005, right-wing grifters were responsible for giving the special education due process business back to OAH. One of the sleaziest special ed law firms there ever was, which happened to be the largest special ed law firm representing school districts in California at the time, was Lozano Smith. It was instrumentally involved in getting the due process hearings switched to OAH in 2005. All of this came on the heels of No Child Left Behind (NCLB) in 2004, which resulted in changes to the IDEA. Those changes created an opportunity for anti-student and anti-parent forces to lobby for changes to how California handled its special education matters, from changes to State law, to changing who enforced the laws from SEHO to OAH.
However, in 2005, something else big happened involving Lozano Smith, right after OAH took the special education hearings back over. Lozano Smith will live on in infamy, at least in my mind, for decades to come following two public displays of anti-democratic behavior.
The first was its epic 2005 faceplant in the matter of Moser v. Bret Harte Union High Sch. Dist. (366 F. Supp. 2d 944 (E.D. Cal. 2005)), which made the news. The second public example that stands out in my mind was its 2014 amicus brief to the U.S. Supreme Court opposing protections for special education students under the Americans with Disabilities Act (ADA) in the matter of K.M. v. Tustin Unified Sch. Dist., 78 F. Supp. 3d 1289 (C.D. Cal. 2015). This second example didn't steal headlines, but the actual outcome of the case was huge for students with special needs regarding their disability-related communication needs.
If special education advocacy has been the "canary in the coal mine" of American democracy, Lozano Smith has been one of the Mitch McConnell-esque specters of obstructive fascism that has been trying to snuff the voices of "canaries" like me for decades. I'm convinced that every single unrepentant person who had a hand in the Bret Harte mess and anything else like it will have a special place waiting for them in Trump Tower Hell, when they die; perhaps it will be named the Lozano Smith Suite.
In the present, all of the concerns raised by this Task Force's report are grounded in the realities I deal with every day. The fact that the authors fear to reveal their identities is also grounded in the harsh reality that the fascists aren't even trying to hide the fact that they are coming for us, anymore. Anybody who stands up for civil rights, these days, is a target, and I realize that includes me just by saying so.
Here's the thing, though. Those of us accustomed to dealing with special education issues who understand Applied Behavioral Analysis (ABA) also know an Extinction Burst when we see one. So long as those of us who see this Extinction Burst for what it is continue to abide by our professional ethics, stand our ground, and stick to the applicable science and rule of law, none of the self-serving histrionics of those with anti-democratic tendencies within our government will overcome our fact-based arguments. We have to keep acting like we live in a democracy or it stops being one.
We may lose battles on occasion, particularly in those States currently permeated by maskless, unvaccinated seditionists spreading COVID as readily as their lies, but the only way we lose the overall initiative is if democracy fully collapses in the United States. All of us "canaries" need to start beating our wings and squawking loudly as the voices of experience when it comes to fighting fascism within America's government, or it's curtains for all of us.
It's not shocking news to any of us that the fascists are targeting local government, including school boards, as a means of seizing control of the country. That's nothing new! That's what all of us working in special education advocacy have been up against since the original laws that protect our children were passed in the 1970s. To the rest of the Country, it's unfortunate that it's now happening to you, too, but we welcome you to the front lines and look forward to working with you to win this soft civil war currently being fought over basic rights and the rule of law in America.
To our colleagues fighting similar battles on behalf of other marginalized groups, we look to unify with you. When it comes right down to it, those of us who exist in marginalized groups collectively outnumber the few individuals at the center who put us in their margins.
In a democracy, majority rules. The minority of individuals who want to rob the rest of us of our rights cannot oppress a unified majority. Special education rights are human rights, just like ethnic rights, gender rights, sexual orientation rights, relationship rights, etc. If all of us whose rights are being infringed upon join forces instead of competing for the crumbs that fall from the would-be oligarchs' tables, we can be sitting at the table eating meals full of freedom with everybody else, instead.
Thursday Jan 13, 2022
Thursday Jan 13, 2022
Thursday Jan 13, 2022
The following is the written transcript of the audio recording of my interview of Zafer Elcik of Otsimo, which you can listen to in the podcast version of this post. This transcription was aided by Otter.
Anne Zachry, Zafer Elcik
Thank you so much for being in this podcast with me today. I really, truly appreciate you making the time, especially since we're having to accommodate international time zones, and I'm here in the United States and you're in Turkey. If you don't mind, could you just go ahead and give us just a brief introduction of yourself and your product?
Thank you for taking the time to talk with me. My name is Zafer. I am co-founder of Otsimo. At Otsimo, we are developing apps for kids with special needs, mostly for autism, Down Syndrome, and mental challenge. What we are trying to do is to provide early intensive education to the mobile devices and the speech therapy, as well. I have a brother with autism. He has been vulnerable for a long time. And I realized that he has special interest in smart devices one day, but I couldn't find any suites or apps for my brother. The typical apps have a lot of advertisements, as well as, like, they have a lot of sounds, animations, and so on, and my brother actually liked to play with them, but he ended up with a bad situation. I decided to create app companies just helping kids on the spectrum. Well, right now we have kids all across the US, UK, as well as Turkey. We have already met the Minister of Education of Turkey. We reach education and speech therapy all across the world through the mobile device.
That is so cool. That's such a powerful outcome to make happen. That's such an accomplishment. That's so cool.
Oh, thank you. So well, one of the things that because we're here in the United States, and we're constantly advocating for kids with special needs to get the services they're supposed to be getting and the supports that they need. And, very definitely, the whole issue of alternative communication methods and kids who have language impairments who can't get their words out, but that doesn't mean they don't have words ... I mean, I've worked for over 30 years with kids with every kind of disability you can imagine, and lots and lots of kids on the autism spectrum with language challenges, but also across all age groups. And, so one of the things I wanted to ask you about - because I did download and install your app and mess around with it, so I could become familiar with it - the graphics and the imagery, and the age ranges that look like on the app max out at like seven and older. And, for my kids on the spectrum who are middle school and high school age or young adult age, they don't see themselves necessarily in the apps, and the tools that are are out there for children who are younger. And, the accommodations they need evolve over time as they get older, and they may still have the language skills of a very young child, but they are still a teenager on the inside. And, so, my question to you was, "Is there ... are there plans to expand the app to have a version that is more grown up and more adult looking and more age appropriate for teens and young adults that will follow them into college?" Because I'm seeing kids who everybody thought they would never go to college. But once they get the help was like "Oh, hey! That's a possibility for you, now ..."
... but these tools can't follow them necessarily. And so my question to you is, "Are you looking to expand it to for to make the tool something that will support older users, especially as your kids get older ... your child users?"
Yeah, actually, it's a great question, because my brother is getting older and older. And, we try to test with my brother as well to what the level will be of the new content in the app. Like, at Otsimo, we approach early and intensive education, because, like, you heard a lot of the time that you know it, like, if the kids can get early and intensive education, it affects our ...
Right, right. Those are my kids who are now growing up and going to college, who, when we first started when they were four and five years old, that wasn't even a thought. But, now that they're 18, it's like, "Oh my gosh! Look what you can do!", because we got all those services when they were little.
That's because, like, I realized that, in the US, as well as in Turkey - I mean - a lot of countries in the world, because, like, we have a lot of users all across the world, and we realized that, like, getting a diagnosis and, then after that, getting the first education is a really big hassle. Like, in the US, as well, like, you need to go to IEP meetings ...
... to get what you need, and it's a big hassle and you lose a lot of precious months, sometimes a year, to just getting the education. That's because we, at first, we focused on the, like, really early and intensive skills, like, small hand gestures, or social skills, and so on. But, after that, we really found out that we need to create content for a really diverse community. That's because, like, right now we have more than 100 games, some of them is really easy, some of them is kind of middle school-ish. But we haven't, like, created, like ... I can set it up, like, we ... our apps are at pre-K to K-2, but after K-2, right now, we don't have real content. That's because, right now, we are developing new content every month, just to keep updated. I don't think so we will create content for university or high school and so on, but I believe it's so go we can go to like pre-K to K-8, and so on, in the near future. We will have a lot of content for that.
Right. Well, definitely the early intervention is a huge part of it. I mean, that's certainly important. And, you know, my background is also in educational psychology. That's what my master's degree is in. And I can tell you from an instructional design standpoint ... but, also I've worked in IT. I've worked it ... I can do some coding, it's not my greatest skill, but it's not like I don't have any coding skills at all. I understand what it takes to build something from scratch in code. And you want to start with the simpler skills and move into the ... progress into the more complex skills, anyway. You know, that those simpler younger skills are foundational, not only for human beings, but also for technology. So, you build on that not only with the kid, but with the tech over time, I would imagine. So, that totally makes sense.
Yeah. Right now, we are developing these apps for more than five years, and still, I believe that we are in the, like, really beginning.
We have more than 20 people. Like, we have psychologist on team. We have educators, developers, designers, testers. A lot of people lately, designers working with us, and so on. And it takes a lot of ...
I can only imagine. I mean, I'm just trying to envision what all the logistics are of making something happen, you know, like what you're doing. And, it's just ... you know, what you're doing is moving the earth. That's huge. And you said something a moment ago that ...
Thank you ... that really caught my ear, and that was, you know, the diversity within the autism community. And, we have a saying over here that, "When you've met one person with autism, you've met one person with autism."
Because, no two people with autism are alike, you know. Just like everybody else, that no two brains are alike, even if they have a common disorder. And so, how it manifests ... and I've got, you know ... and this goes to my next question is, you know ... I've got situations out here where we have students with IEPs that will say in the IEP that they're supposed to have an AAC device, with hardware and software loaded on it, but they won't specify what they're using. They won't name the device and they won't name the software in the IEP, as though all AAC tech is interchangeable. And, it's not! Each technology is different and nuanced, and every student has to learn that piece of technology as a way to learn language. Like, if you start a kid out on ProLoQuo2Go, and then you move that kid to another school, and they see that, "Oh, well. You've got an an AAC device with some kind of software in your IEP. We have to implement your IEP that you came in with, but we don't know what you were using." And they'll go off and get, you know, a Samsung smart pad with some kind of who-knows-what software installed on it. And it's not the iPad with the ProLoQuo2Go the kid knew how to use from the last school. And so, what happens is their language gets taken away. And so, I guess my question to you then becomes, "If there's other technologies that are going to be used as these children get older, like ProLoQuo2Go, going into the adult world, do you think that it's wise to start them off on something different and then switch them, or does it make more sense to get them accustomed to one piece of technology and have it carry them through, or does it make sense to teach them more than one type of AAC tech so that if one goes out of business, the other one's still around?" I mean, that's my concern. It's about the people in the public schools who tend to think that AAC technology, if they're not specifically trained in it, they think it's plug-and-play, and you can pull one out and push another one in. And, I wonder what your feedback on that what would be.
Yeah, my feedback on that, like, is, we have also AAC solution in our special education app.
We are targeting mostly young children instead of, like, ProLoQuo2Go or other AAC devices as well. And I believe in ... so, like, we need to introduce the AAC to the people and individuals on the spectrum as soon as possible, because, like, we have a lot of research also going on there. AAC actually doesn't have any disadvantages to learning a language. It also have advantages to learning language or concepts of vocabulary, and so on. I believe ... so, we need to, we need to show the AAC in really early stages, because it's helpful for them. And the second thing I need to say: We need to find a way to, like, a different kind of solution. Like, sometimes you need Tobii Dynavox with a eye-tracker device on it ...
... and so on, and sometimes you need also some AT with a light reading cue and open source system with you. I think that, like, the schools doesn't ... like, schools must not mandate an AAC over others. They need to accommodate the diversity, the diversity of different assistive technology. That's because, like, I also came across some schools, like, they're using just one tech and they don't want to change, but it doesn't help anyone. Like, it just helped the teachers, maybe the managers there. It doesn't help the kids and the family. Because I think that, like, teachers also have a lot of goals, as well, because of the ... I don't want to say that, but, like, teachers need to accommodate the diverse kids ...
... diverse problems or ... the diverse solutions of the kid, and find a way to use the ... what the kids like, what the individuals like. Because, like, communication is essential, and when you are changing a device, you're actually changing the whole communication system. And, you force them maybe to voiceless.
And that's a huge drawback for diverse communities. That's because, I believe it. So they don't need to see a lot of different AAC, but they need to stick with what they feel comfortable.
Right. It's doesn't do any good to teach a kid how to speak using the tool and then take the tool away from them. And...
... and that's our concern. And that, again, goes back to how special education is legally regulated here, because you can't just go and change things up once it's written into the IEP. That's a legally binding contract that the parents can hold the school to that says, "Hey, these are the things you're supposed to do for my kid." But if the contract itself is flawed, if the what it describes in writing is not appropriate, then that's what's enforceable. And, what we run into is ... Yes, I agree with you that you have way too many school districts that will standardize on a particular technology, because they get bulk discounts. If they buy in bulk from the vendor, they get it less per unit.
And so, it's cheaper to get multiple licenses of a particular AAC and a particular device because they can buy those in bulk, because all of these vendors have realized that they can sell more in quantity to the schools if they can convince them that their technology will solve all these problems. And, for a lot of kids it will, but you have to specify what it is in the IEP. Because, if a kid has started out, say, on your technology and it's part of what's being done in the classroom, if it's not written into the IEP, and that child moves to another area, and that IEP has to follow them to the new school, but it doesn't say in there ... that they were using your technology, the new schools not going to know to put that in. And so, what we run into is sort of a mixture of too vague of a description of the accommodation, as well as what you were talking about, what is sometimes is over-specified to the point where there's no flexibility to try anything new.
Yeah ... Yeah.
So, you don't ... you have to strike a balance where there's enough flexibility with the way the document is constructed that trying out new technologies is not prohibited, but what the child is familiar with is also not taken away. And so, it comes down to the wording of the document. And I think that that's something that a lot of solution developers find frustrating when they enter into the American special education system because they're thinking, "Oh, America loves special ed! They actually have laws and they make it free and they do all this stuff!" But, when you actually try to participate in it, it looks a lot different to live through it than it looks like on paper. Yes, there's an embracing of it. But there's also all of these rules that get in the way of actually doing something about it, sometimes. And so, sometimes the rules are there to help, and sometimes they get in the way. And I think that, especially as an international developer, for you coming in to try and insert your product into that kind of situation and have been successful, that's enormous. Because that's not an easy thing for anybody to do. And for you to come from outside of the country, and insert yourself into such a heavily regulated situation, with a solution that people are actually adapting and accepting and using, I think that's huge. So that's ... congratulations on that. That's enormous.
Actually, like, the system in the U.S. is changing by state-by-state. And that's because like, maybe it's district-by-district.
You are right. They're involved in that kind of stuff. We here are actually trying to be a company like family-friendly, or special individual-friendly. What we try to provide is an additional value. Like, they can pick what they want. Mostly ... most of the other companies, like there are big corporations in the U.S., like, they are selling bulk, but they don't update the software for a long time or doing anything like that, specifically.
That's true. Right.
That's because, like ... and also, some states and district doesn't ... they need to cover by IEP by law, but they have a lot of that system. That's because kids couldn't reach out for, like, the AAC they need.
That's because we try to find a way to be an affordable and accessible solution for all families, instead of, like, binding the districts or states to just forcing them into one single product. But, you are also right. On the other side, if the kids started some sort of specific AAC, I think, I believe it, so they need to follow the same system in the other schools or other districts because, like, they learn how to communicate through that. Like, it's something like you learn in English in one nursery; while you carry on your school, you need to ... you're forced to talk in French and ...
... it's impossible for you to actually ... it's something like that.
... take a special tech from their hand just because of the bulk discount or so, but it doesn't help anyone.
It's helping the ... maybe the district managers and so on.
Exactly. And that's a lot of what we run into is ... we run into administrators who spend zero time in the classroom, who are business office people making decisions that affect the classroom based on finances, which is illegal, but it happens all the time, because they don't know any better. They don't realize their decisions are going to have that big of an impact on a kid. They're not even thinking about that because their business office people. And so, that's I think it's ... we're running into an issue over here with respect to how the bureaucracy is organized. It was created during the Industrial Revolution and emulates a factory. And, even though modern business technology has evolved well beyond that, public education technology has not. Public agency technology has not. The public sector, our government agencies, are decades behind technologically speaking, which I'm sure you've encountered with all of their different business systems ...
... and things and accounting systems and was like, none of them are running the same operating system. None of them are running the same software. So, it's a highly disparate situation. And it kind of reminds me when I was working in IT years ago, around the, like, the late 1990s, early 2000s. I went through that whole Y2K thing ... and ... when I was working in IT. And, at the time, the customers that I had for the company I worked with were mostly in the freight forwarding business. And, it was when U.S. Customs was switching to paperless. And, my goodness! The pandemonium and chaos that broke out amongst all of the people who handle paperwork for shipping goods back and forth overseas. I mean, this was all a paper driven processing, and now Customs wanted to go paperless, and it was something. And, nobody had the same operating system. Nobody had the same software. But, everybody's stuff was somehow supposed to magically talk to U.S. Customs electronically. And, making that all come together over the span of like five to seven years was outrageous. But at the same time, I see that now happening in public education where we're finally starting to reach that place where we're just going to have to deal with it in do the upgrades. And, I think that once the upgrades get done, and we get to a more cohesive modern system, that it'll be a lot easier because ... we have better technology being implemented in the classrooms than we having implemented in the business offices. And, I think that that's a lot of the problem is that we have this antiquated bureaucracy responsible for teaching modern children. And so, we have all these innovators like you bringing technology in, but what's it supposed to integrate with? It's like a green cursor on a black screen or an amber cursor on a black screen. I mean, some of the tech is so old. And so, I know that you're having to go in and blaze a trail in a place where, you know, in a space in an industry where technology is not as easily as embraced as it is in other places. So that's another thing that you have to be proud of yourself for, because it's another accomplishment, to be able not only to come into the American market, with all of the regulations involved, but also just all of the backwards technology that you're going to have to overcome. And so you've really taken on something that's enormous. You know, I have one last question. I have a young man on my caseload that I've been with for a very, very, very long time, and he's severely, severely, severely autistic. But he's even more severely intellectually disabled. I think the intellectual disability gets in his way more than the autism does. But, when he was much younger, he was very self-injurious. And he would hit his head against very hard surfaces, like floors, and roads, and walls and ...
... and so he was a head-banger. And, he would hit himself and he would hurt other people. And, it was because he couldn't get his words out. And, when he would speak, people wouldn't take him seriously, because he did a lot of scripting. So they didn't listen to anything he said, even when he was trying to speak for real. And so, it got to the point where the behavior became his method of communication. And it took a long, long time; he had to be institutionalized to break him of that habit, and teach him to use his words again, and to get him to, you know, where he could be more functionally communicative without engaging in these violent behaviors. Unfortunately, in the course of all of this before I, you know ... by the time I got involved with him, a whole lot of harm had already been done. And he had managed to, as best as we can tell, detach his own retinas from head-banging. So, now, he's permanently blind.
He hit his head so hard that he blinded himself, or at least that's what the doctors are saying, because he just ... all of a sudden, his retinas peeled off the backsides of his eyeballs and he couldn't see anymore, and, so, you know, and it was after years and years of head-banging against really hard surfaces. And, his school would ... they didn't know what to do with him, so they would just put them in a seclusion room and leave them in there to whack his head on the wall for 45 minutes at a time. And, needless to say, there was a lawsuit. And, you know, we got compensatory services for him. But what we can't do with him, now, is teach him to use a traditional AAC or any kind of device-based technologies where, you know, all these wonderful things like what you created, because he doesn't have eyesight anymore. He can't see the screen.
And so, you know, we've had him evaluated by experts to help figure out what we can do for this guy, you know. And, he's now my friend. I love him to death. He's my sweet little lamb. He ... I mean, I don't have any behavior problems with him. But, here he is now, you know, as a young adult finally starting to say, "Okay, well, I think I want to have a life and do something with myself," and the tools and the resources are so now limited for him because of the eyesight loss, because everything for autism was all about visual schedules and visual cues.
And, you know ... and I can't do that with him. And so, what we've had to do is, I create tactile schedules for him where I take dollhouse miniatures, and I glue them on a great big piece of foam board. And, I make like a visual schedule, but instead of looking at it, he's got to touch each item, and it moves through a progression so that he can, you know, follow the flow of what it is we're going to do. And once he learns the routine - once he gets that ritual down - he knows the order of events, I don't have to use the schedule with him anymore, because he already knows what's coming. Now he knows the routine. But, to teach him new schedules, I would have to glue together $200 worth of dollhouse miniatures off of Amazon onto a piece of board to give him an idea of what was about to happen. And, what I'm not seeing ... and so, I'm kind of putting it out there, hopefully you'll ... this is something you can think about ... are tools for individuals with autism who are also blind or are deaf and have these sensory impairments on top of the autism that makes the typical solutions inaccessible to them. And just your your thoughts maybe of what you think might be a good way to go in terms of adapting a device for use with someone. Like, I can see if someone has hearing loss ... hearing loss, you could do vibration. You could make the device vibrate ...
... in the absence of sound. But when for someone with vision loss, I don't know how you replicate a visual schedule, other than to just audio record yourself, like in the voice recorder, you know, just speaking your way through it. I've done that, too. But it doesn't seem to be as powerful as a tactile schedule. And I'm curious as to, you know, when I talk to developers, what do you think about that? What do you think could be done for someone who's got multiple disabilitiees and the autism is just one of many?
Yeah, it's a nice question. Like, we also came across like, people with hearing disorders with autism, and so on. We try to make our product as much as accessible for that. I don't know, literally, like, because we are not doing visual schedules. I don't know, in specific people region schedule basis. But for the Apple devices, there is, like, assistive disability techniques. And I know that, for example, ProLoQuo2Go has a system. You can actually use the switches or you can ... they will actually scan the screen with them. But, you need to teach them this assistive tech on the Apple devices to the kid. And, I believe it, we are also ... there will be our apps right now. I can't say we are 100% accessible for vision problems, or hearing problems and so on, but you can use that assistive settings in the settings in Apple devices. And, combined with that assistive settings with the apps like us or ProLoQuo2Go, or if you're using a visual schedule app, you should reaching out to developers and saying them, like, "Could you implement assistive settings to our device on your app, because we are using it for for this, this this?" And, that's the only chance I can see from my point of view ...
That stands to reason.
Apple has a great assistive settings for people with vision problems, as well as hearing problems. That's because, if he or she can use them assistive techniques while using the device, apps also can be a part of it and you can use that settings in the specific apps, and you can just scan the screen instead of picking seeing regionally, and so on. You will see here what you, like, the device actually loudly saying that what they're clicking, and they can actually talk thanks to that, while just memorizing what they were seeing. That's doable and a lot of companies are doing but, yeah, it's a one more additional step of teaching.
Is it like an API where you if you're a developer, you could reach out to Apple and say, "Hey, we want to link in with your accessibility tools. What's the code?"
Yeah, it's kind of an accessibility feature. You use that kind of specific codes in your app. At times, too, the Apple accessibility feature actually can be used in the app as well. The name is ... or ... you can use voice over, or you can use in the voice over settings. You have, like, Braille alphabet, as well as, like, the others. And also hearing devices can be connected to the Apple devices and you can use for specifically hearing disorders and so on. That's because like, the settings if the app using that specific API or SDK, for just specific assistive technology settings, you can use it in the app as well. And Facebook, Google, using these APIs a lot. You can test it out there. You can see how they ... how it's working. And if you're using one, we just schedule it out. You just reach out to developers and say what you want. That I believe in, so they will implement it in near future.
That's a really good point. I know that one of the colleagues that I work with who I've actually have involved with this student in the past to teach independent living skills, she herself is blind. And she ... her whole house is an Apple smart house at this point, because she's become so dependent upon the Apple technologies to ... as her accommodations ...
... but it's interesting you would say that because the first time I introduced the two of them to each other, we met at a restaurant in the community that is entirely staffed by individuals with mental disabilities. And, we were there to meet each other - for him to meet her - and I went inside to go get the menu. And, there was a line! And, I had to wade through a sea of people before I could even get the menu to bring it back out to him and read it to him and ask him what he wanted. And my colleague had already looked up the menu on their website, and had her phone read it out loud to the both of them so that, by the time ...
... I got back outside with the menu, he already knew what he wanted.
Yeah. Like, Apple devices are expensive, but Apple as a company, really pro assistive technology. That's because, like, they devices are best in case for using that kind of technology.
Right, they've got the most experience working with this kind of stuff; they've been doing it longer. And well, it just for the for the benefit of our listeners who are hearing this conversation, I mean, here in the United States, if you if you're on the autism spectrum, especially if you have other disabling conditions, other developmental disabilities, you're also going to be eligible for services from Department of Developmental Services. And every state has a Department of Developmental Services. Now, again, federal regulations that come down from the top, just like special education law, but then how each state ...
... implements the federal regs varies from state to state. And so with Developmental Services, some states, the DDS is its own thing, and you just go to the DDS office and that's who you deal with. It's the state agency, and they have offices in different communities around the state. But in California, and in other states, it's a little bit different, where you have what's called regional centers. And, regional centers are non- ... here in California, are non-profit organizations that contract with California's Department of Developmental Services. And, their function is to provide anything that someone with a developmental disability needs above and beyond what any of the other generic agencies have to do. So, for example, for a child who's in, you know, K-12 age, the school district is going to have the primary responsibility for meeting their needs in terms of publicly funded programming for people with disabilities. But if there's anything that doesn't have to do with school, like afterschool childcare, or social skills in a non-school setting, like a Boy Scout troop, or something like that, there's services above and beyond what the school is obligated to do, those things fall to regional center. So, if a child gets an iPad with your technology - with Otsimo - loaded on it, for example, at school, that's only for school. If they need to be able to use it to communicate with people outside of the school day, they need a second separate iPad that they keep at home and take out into the community, and that's regional center. Because the school's ...
... only responsible for what happens at school, or anything to do with homework, you know, anything that's school related. But, if it's beyond that, if it's just life in general, now, you're talking about regional center. And, for our individuals who have graduated from high school with a diploma or aged out of special ed, and now they're young adults and they're going out into the world, regional centers and the Department of Developmental Services are obligated to serve these people their entire lives, not just when they're children. So, if someone is using an iPad with your technology, or ProLoQuo2Go or anything else, and then they're no longer a public school student - they've grown up, they've gone on - but they still need that iPad with that technology on it to communicate with people, then they have to go back to DDS, or regional center, depending on how its configured in their state and say, "Okay, well, this is a life functional skill thing for me. This is an activity of daily living. If I don't have this device, I don't have a means of communicating with people." And so, the laws very definitely protect their communication rights. And so, it falls on a different agency to purchase that equipment. It doesn't automatically fall on the shoulders of the families to come up with all this money to buy all of this tech. There's public dollars out there for it. Just, people need to know which agency to go to for which circumstance. If you're talking about someone who is an adult who's looking to get a job and needs to have this technology to communicate in order to be employed, well, now you're talking about the Department of Rehabilitation, which is also federally funded and also regulated under the same bodies of law as special education law on a federal level. But again, every state does it different. Some states will roll their Department of Developmental Services and their Department of Rehab together as one solid agency that takes care of both of those responsibilities. Where others, like in California, DDS it's its own thing and it's got its regional centers, and the Department of Rehabilitation is a completely separate entity that you have to go to separate from everybody else and go ask for their help. And so, getting all of these different agencies that each may have an individual responsibility to one person can be a lot, but any one of these agencies could end up having to finance the technology, the communication device and software, that these individuals would need. And so, I'm just putting it out there not only for you, but for our listeners, that there's more than one way to get the job done, and if one avenue is not appropriate for an individual, there may be another avenue that is, and that could still make your technology accessible to people outside of just the schools, even if they can't afford to buy it personally. And so, I just, you know ... Yes, I want my families who can afford it, they can just go straight there and get it. It could even be something they could get reimbursed on by the schools, if they buy it themselves because the schools haven't given them anything appropriate, and that ends up working for them. And so, there's a lot of different ways here in the United States where families can access these tools, including your technology, even if it's not through the public schools.
There might be another way to do it. So I just wanted to put that out there. Have you worked with any other agencies other than the school districts out here?
Not yet. But we will like to working with agencies and so on. Right now, we are on track to complement ...
I think what I'm going to do is I'm going to share your information with, here in California, we have First5, which is an early childhood intervention program, separate from the schools, but it works with them, sort of, but it's separate. And, it is all early intervention. And, very often they're the ones making the referrals.
Yeah, that would be awesome.
Yeah, they're the ones often finding out, especially when you're talking about children from low-income, non-English-speaking families, immigrant families ... they don't know what to look for necessarily, or, even if they see something's up, they don't know what to do.
Very often, First5 will be the one that catches it and makes the referrals and gets these kids into the appropriate supports and services. And so, this is the kind of stuff that they're going to want to know about. So I'm very definitely going to share it with them. And, then I'll also have it on our website and everything and I'll put it out there on our social media.
So, I forgot to mention we have also a Spanish version, as well.
Many families are using our apps in U.S., is reaching out to special education.
Oh, that's huge. That's enormous to know. I'm excited to see what your project is going to be doing as it expands use through here in the United States, and as it evolves over time. I'm going to be putting links to it on our ... on this ... the post for this podcast. Wanted to ask me about anything?
No, thank you for your time. Like, it was a nice coffee talk with you. Like, I haven't imagined that, like, we are going to talk in this prophetic situations, and how I am thinking about it. It was nice questions. It was the one of the best questions I ever ask. Thank you for that and thank you ...
Oh, of course! Thank you!
... for your time and showcasing our product, as well as me. Happy to see you in two years, three years after this podcast, out with the new products focusing on adults on spectrum. That will be really awesome!
Click here to see Zafer's TED Talk (go into the video settings on YouTube to turn on English or other language translation), and see how disability rights advocacy and smart device-based interventions transcend borders and can put evidence-based practices into the hands of the people, regardless of whatever rules and regulations may apply where they live.