“Making Special Education Actually Work”

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Legitimate Parent Advocacy vs. Conspiratorial Movements

Photo Credit: Nik

As much as the work we do at KPS4Parents focuses on social justice issues that include parents’ legal rights in the special education process and related areas of public agency regulation, I’ve been hesitant until now to say anything about what has been charading as a parents’ advocacy movement, lately. This is mainly because of the most recent developments involving the leadership of one such faux parent advocacy organization, Moms for Liberty, which pretty much speak for themselves and eliminate the need for me to work that hard at supporting my arguments with evidence.

I’m busy. I don’t have time for deep dives into the world of politics when I’m already doing deep dives into the peer-reviewed research and case law during the regular school year. I see every bit of stupidity and ineptitude in local government as we see in Congress on the daily. Idiot politicians are the reason why lay advocates and civil rights attorneys are needed in a democracy. Mark Twain is quoted as saying, “In the first place, God made idiots. That was for practice. Then He made school boards.” It’s not like any of this is new.

I’ve got over 20 students on my lay advocacy caseload, at least two of those cases are going to due process, several of those cases have outstanding remedies due to them from a federal investigation of their local school district that have not yet been negotiated, and others are requiring me to work with families at the local agency level to hopefully resolve their concerns, all the while also making the record just in case formal complaints or litigation become unavoidable. I’m not going to stop all of that to write a blog post/podcast episode unless the moment is right, and it’s now right.

I’m won’t rehash the Moms for Liberty scandal, here. You can read up on that on your own time, if you don’t already know about it. What I’m focusing on here are the social and psychological sciences as they interact with the rule of law in our democratic republic, and what that means for this country to have a government that is “of the people, for the people, and by the people” with respect to legitimate parent advocacy.

We’re meant to have a representative government and it isn’t representative of most of “the people” when a tiny minority of whack-job conspiracy theorists and con artists with prefrontal cortices made of cottage cheese or something close to it, are put into positions of authority, or otherwise have influence over those with authority, and have access to taxpayer resources with no effective systems of oversight or accountability. Once in power, people like these then attempt to bend reality to fit their whacko notions of how things should be, regardless of what the majority of their constituents want or need or the actual facts of the situation, usually for their own financial gain and without regard for any harm done to others. Berkeley Breathed referred to such an individual as a “tax-fattened hyena,” in one of his old Bloom County cartoons. I find the term eternally apt.

I find that these are “the people” employed within the public sector who are the most opposed to any kind of data collection that could be used as an audit trail and enforcement tool, which is why the backend business automation of most publicly funded agencies at the local level is such garbage. It’s really hard to misappropriate public funds when you’re leaving digital footprints right back to yourself in the process. Effective office automation on par with what has been happening in the private sector for decades has been limited in the public sector for supposed budgetary reasons, but the reality is that the ROI on a good system would make the upgrade pay for itself in no time. It’s not costs that are being avoided, it’s audit trails.

Because “the people” are expected to hold their government accountable according to the rule of law, it is necessary for “the people” to know how to do so and be given access to public agency information through various client’s rights, freedom of information, and public records laws. Because of our laws regarding public access to public agency information and the mechanisms of accountability that are built into the regulations that describe how our public agencies are supposed to operate, our democracy equips us with powerful tools that allow us to advocate for appropriate outcomes as regular members of society, including as parents for our children in programs for which we pay taxes to serve their needs as a matter of law.

Keeping parents in the dark about their rights and the proper paths for recourse and distracting them with pointless displays of anger and hostility are all parts of a strategy to undermine legitimate parent advocacy, not support it. It drains parents’ energy, time, and resources to pursue legitimate remedies by wasting it all on displays of emotion that rarely change policies and create more problems than they solve. The actual processes and procedures afforded to parents as per their lawful parent rights in the public education setting are the only mechanisms of democracy that are designed to address meritorious parental concerns.

No matter how many fits at a school board meeting a parent may throw, until they file a formal complaint of some kind, there’s not much anyone can do. When parents bring their legitimate concerns to a school board meeting, the proper response is for someone from the school board to help the parent exercise their rights, including helping them file a formal complaint. When parents attempt to argue for things outside the scope of what their public schools can legally do, the schools are obligated to explain how the rules actually apply and what can legitimately be done to address such parental concerns.

In the case of special education, this is specifically regulated at 34 CFR Sec. 300.503, which mandates the provision of Prior Written Notice (PWN) to parents whenever a change to a child’s special education program is proposed or denied by the public education agency. If the public education agency’s explanation doesn’t make sense for why it is proposing changes or refusing changes requested by parents, parents have a right to use whatever cockamamie excuse they’ve been given in their PWNs as evidence against their public education agencies in regulatory complaints or legal proceedings. Our democracy protects parents with rules like these, but knowing how to use them and enforce them isn’t something most parents know how to do.

One of the methods of depriving people of their rights is to deprive them of any knowledge of past successful efforts to secure the rights of citizens, such as with the litigation and legislative history of special education law, and the processes and procedures by which everyday people can now assert their rights under the law because of how past cases were successfully argued and won and how legislators have responded to the relevant scientific and legal developments over time. This is why these organizations are so strongly opposed to any curriculum that accurately describe the effects of slavery on American society and governance, and don’t want to acknowledge the growing body of science that better explains gender and sexual orientation than what the science of the past was able to tell us because it challenges behaviors that have been learned and practiced over generations according to religious and political beliefs that don’t always abide by observable reality.

For example, during the 1600s, the astronomer Galileo died under house arrest for heresy after daring to assert that the Earth rotates around the sun based on his observations using telescopes and calculating the movements of the stars and planets, because this contradicted the Church’s position at that time that the Earth was the center of the Universe and everything in the skies rotated around the Earth. Galileo was right, of course. He witnessed the actuality of God’s miracle, but rather than revel in its realization, the Church rejected it because it contradicted a long-standing myth that was being knowingly perpetuated by the Church so that it was not contradicted in the eyes of the people, lest it lose their trust and obedience. The Church did not acknowledge that Galileo was right and absolve him of heresy until more than 300 years later during the 20th century.

A fact-based discovery that contradicted the Church in such a significant way would have cost the Church a great deal of credibility among its believers if acknowledged as true, or at least that’s what the Church apparently feared, so it tried Galileo for heresy and gave him the choice of being found guilty and thrown in prison for the rest of his life or accepting a plea deal and spending the rest of his life under house arrest. He took the plea deal.

Whether you’re religious or not, the Universe functions according to set rules that can be measured, analyzed, and understood with enough time and resources. There may be a difference of opinion as to why that is and who or what caused it to happen, but what has actually happened with respect to Creation is an observable fact that simply has to be studied in order for the design’s function and purpose to be understood.

For example, humankind just spent seven years flying a space craft to an asteroid that is due to smack into the Earth in about 150 years so that we can start figuring out now a way to prevent it from hitting us by the time it gets here. We just flew this thing over millions of miles of space, right up to this asteroid, punched the asteroid using a mechanical arm, captured chunks of debris and dust that flew up off the surface of the asteroid from getting punched, then flew the debris and dust all the way back to Earth so we can analyze it and figure out what the asteroid is made of, which will help us figure out how to prevent it from hitting us. You cannot tell me that our species is capable of doing that and yet we can’t apply science to improve the quality of life for every human on our planet without destroying the world around us.

I help everyday families of learners with disabilities acquire the necessary knowledge about the processes and procedures that apply to their disability-related needs and rights so they can successfully advocate for their loved ones according to the applicable science and the rule of law. I understand the regulated processes and procedures that give my clients access to what the law promises them. I use the applicable sciences to identify each learner’s unique needs so as to inform the requests I make of publicly funded agencies and programs on their behalf. I understand what it means to facilitate “the people’s” participation in democracy at the local level, including participation in state and federal investigations, as well as due process hearings and disability-related litigation in local, state, and federal courts.

I understand that the only way to uphold democracy is to participate in it according to its rules and regulations. Anything that undermines the democratic process by violating a student’s constitutional rights, down to a shoddy triennial evaluation or a garbage IEP, is fair game for citizens knowledgeable enough to understand what they are looking at and the remedies available to them to fix anything wrong. Keeping people ignorant of what has worked in the past is a deliberate attempt to undermine people’s advocacy for themselves, their loved ones, and their communities in the present. People who fail to study history are doomed to repeat it, thus learning their lessons the hard way from trial-and-error rather than from the example set by those who came before them, which wastes time and slows down the rate at which society becomes smarter.

The first step of preventing people from advocating for themselves is preventing them from knowing about past efforts of advocacy that were successful, hence the book bans, altering curriculum standards to promote misinformation and omit important accurate information, protesting community-based pro-literacy and historical accuracy efforts spearheaded by minority groups, and attempting to control any other literary outlet that could expose children to facts that make these individuals uncomfortable. Keeping people ignorant is a powerful tool of oppression. That’s why American slaves generally weren’t taught to read. A literate oppressed class can communicate and collaborate more effectively to rise up against their oppressors.

People forget that America went through upheavals similar to what we are experiencing right now, back in the 1980s and 90s with some people freaking out over mandatory seat belt and motorcycle helmet laws and “no smoking” laws in restaurants and bars the same way some people freaked out about vaccines and masks during the worst of COVID. Back then, the Cold War had all the doomsayers expecting everyone to die in an unavoidable nuclear holocaust. Tipper Gore was coming for everybody’s rock music lyrics and Larry Flint, who once ran for president on the Republican ticket, was defending his first amendment right to show exploitative photos of consenting models to consenting purchasers of his published works, thereby effectively defending the first amendment rights of all pornography publishers.

Ironically, many of the men who I remember from back then supporting Larry Flint’s first amendment rights have since taken considerable issue with Colin Kaepernick’s first amendment rights when he peacefully protested murderous police violence against people of color and other minorities, as well as racial inequalities in America in general, by silently kneeling during the national anthem before the start of professional football games. Games! Grown men running around in matching outfits chasing balls and each other, like that’s somehow more important that the fact that we have a national epidemic of people on our local police forces terrorizing and murdering certain groups of people at will and getting away with it. It rather makes clear that they were willing to defend democracy when it meant they could look at pictures of sexually exploited models, but when it comes to protesting homicidal abuses of police authority against people of color and other minorities, as well as racial inequality in general, that is “a horse of another color,” which is disgusting.

My point is that the whacko minority has always been around, hypocritically asserting itself when it sees the opportunity to cite the law in support of its own agenda while denying the same protections to others with whom they disagree, before retreating into the corners and staying silent for a while until circumstances provoke them into coming out of the woodwork again. With each periodic re-entry into the mainstream, the whackos, at least temporarily, recruit others to their cause until their actual motives and sheer stupidity become evident to their recruits, who then abandon them as they begin to recede back into the woodwork. It’s a predictable cycle and now people are living long enough to see it repeat in their lifetimes.

When you realize it’s a predictable cycle, each new “Groundhog Day” moment leaves you better prepared for when the cycle repeats itself again. The benefit of learning from history is not having to waste time repeating past mistakes through trial and error to eventually arrive at the same conclusions. It’s Vygotskian scaffolding realness. It allows you to step into the problem-solving at a much later stage in the process, building upon the knowledge that was gathered by those who came before you, instead of starting from the beginning with nothing.

Here’s what I can tell you about having to interact with the crackpots that have infiltrated the public sector or otherwise raise pointless hell that interferes with the legitimate functions of government at the local level, as well as my childhood growing up in the middle of the still butt-hurt losers of the Civil War who have just been waiting for as long as I can remember for Dixie to rise again so they can get a re-do of the Civil War: I’m not kidding when I say their prefrontal cortices are made of cottage cheese, or the neurological equivalent thereto.

I’m entirely willing to believe that this is due to environmental deprivation of developmental learning opportunities throughout childhood and being raised by uneducated, usually deeply religious, authoritarian parents who supported slavery or descended from people who did, remained bitter and deeply chagrined about losing the Civil War, and relied on corporal punishment as their primary parenting method. I don’t think most of them were necessarily born without intact cognitive hardware to begin with. I think an awful lot of perfectly normal humans born into that culture have been deprived of developmentally appropriate environments during childhood that prevented the full development of their brains due to cultural beliefs that strictly controlled their lifestyles and environments.

There is a famous case study of a poor woman named Genie who was grotesquely neglected and abused by her family, and then subsequently exploited by the scientific community to study the effects on her development of spending the first 13 years of her life either strapped to her bed on her back or strapped into a toilet chair, always alone in her room with almost no human interactions. She spent most of the first 13 years of her life alone in that bare room with no toys, no language, and no intellectual stimulation. As a result, her brain failed to develop and she will always be intellectually, communicatively, and physically disabled and require constant care.

There were a lot of ethical concerns around how the research community handled Genie once she was rescued from her family. That said, her situation provided tremendous insight into what can happen to the brain of a developing child when necessary environmental stimuli are not present to trigger the brain to grow and develop. Play is learning, and formal education only adds to the learning that a child is naturally inclined to pursue independently in a developmentally appropriate environment. When children are deprived of developmentally appropriate environmental stimuli, the parts of their brains that are most ripe for learning are given nothing to learn and will atrophy from lack of use.

Genie’s uniquely terrible situation made clear that, once developmental milestones were lost due to environmental deprivations during childhood, they could not be recovered. This has since informed a great deal of science designed to understand how environments that contain some developmentally appropriate stimuli but not others affect human development across the lifespan, starting in childhood. In attempting to understand why the whackos are acting so whacky, it helps to understand that a fair number of them can’t help it.

This is how we’ve come to understand how It is entirely possible for a person to get just enough input from their childhood and adult environments to learn how to do accounting, cook dinner, and fly a plane, but still have failed to developed in other areas necessary to functioning as a fully capable member of society. Intellectually capable people with under-developed social/emotional functioning can pose a danger to themselves or others, particularly with respect to domestic violence and disgruntled employees.

What we are now starting to understand about the effects of children being raised in environmentally deprived environments explains a lot in hindsight, but creates a whole new set of challenges about how to ethically address this as a threat to domestic tranquility going forward. Our current societal problems with mass shootings are strikingly similar to the suicide bombers of the 9/11 era. Radicalization is a lot easier to achieve with people who have “holes” in their development from inborn disabilities and/or being raised in developmentally deprived environments. Parents who were raised as children in developmentally deprived environments are more likely to perpetuate the deprivation with their own children because they don’t know that something is missing, much less what it is, so they don’t know to add it to their children’s environments.

Education that includes developing critical thinking skills, such as those promoted by the Common Core, is necessary to create a public that is educated enough to participate in our government “of the people, for the people, and by the people,” with any success. So, when these groups start coming for our public education system to remove content and control what facts our students are allowed to be taught and which facts will be withheld from them, that’s censorship, not first amendment freedom of speech or evidence-based instruction. It’s entirely unconstitutional, and it violates best practices.

That is not legitimate parent advocacy. That is an organized effort to undermine our democracy by groups of radicals looking to cloak themselves in the language and superficial appearance of a cause people can support – here, parents’ rights in the public schools – so they can infiltrate, undermine, and profit from running our public systems in a broken way. As someone who does the job for real, I resent getting lumped in with these kooks by public education agency officials and their representatives when I attempt to help a family avail itself of the actual rules and regulations as a legitimate function of democracy. I deal with enough “Karens” employed within the public schools; I don’t need to also be associated with the “Karens” high-jacking the legitimate cause of parents’ rights and using it as a dishonest cover to pursue undemocratic ends.

In the special education context, which serves as a good example of the kinds of regulated mechanisms of democracy that exist at the local level, parents have federally protected rights to, 1) informed consent, meaning they fully understand any special education-related documents to which they are asked to sign their consent, and 2) meaningful parent participation in the IEP process, including a voice in educational placement decisions. This means that a parent’s input has to be seriously considered by all the other members of the IEP team, and it’s understood that the parent is automatically a member of the IEP team as a matter of federal law. The public schools are not permitted to unilaterally decide what goes into a student’s IEP without parental input and parents have recourse if they ever disagree with the public schools about what their students with disabilities require.

There are all kinds of rules and regulations that describe how parents of children with disabilities can avail themselves of the rule of law and enforce their children’s educational and civil rights. The problem is that the rules and regulations are complicated, the science that applies to their children’s unique educational needs is complicated, the processes and procedures take way too long for comfort, and there are usually at least some unrecoverable economic costs to the families that take time to pursue appropriate remedies from the public sector for their loved ones with disabilities. It’s not fair to the person with the disabilities when the people responsible for advocating for them, usually family members, know less than the people from whom they must make these requests.

The power imbalance is significant and is only further complicated by the reality that the public sector employees have millions of taxpayer dollars to tap into to pay lawyers to keep them out of trouble. Think: “pre-conviction Michael Cohen.” These are often high-priced fixers paid by tax-fattened would-be oligarchs who view their publicly funded agencies as their own little personal fiefdoms, and their consumers as just a means to their own personal financial ends, as though public program beneficiaries solely exist to justify the publicly funded paychecks of public agency administrators.

Every state has adopted standards by which all of its public schools must abide for the purposes of providing America’s K-12 students with what each state considers appropriate for students to have learned by each grade level across all core subject areas. These whacko book-banning conspiracy theorists and their dog-and-pony road shows at school board meetings, public libraries, and community-based literary events are taking their arguments to the wrong venues if they don’t like what is being taught in their states.

Most of these folks tend to favor the idea of reduced federal government and increased state rights, so I don’t understand what their argument is, here. They have an existing state right to establish their curriculum standards at the state level, and if they don’t like those standards, they can put forth proposed state legislation or a bring a lawsuit against their state that proposes to change their state’s standards, but their local school districts are still responsible for satisfying their state’s then-current standards until such time as they are changed, as a matter of law because this is a democracy, and that’s how you change the rules if you don’t like them in a democracy. If attempts to change the curriculum at the state level fail, one’s recourse could include filing a lawsuit or running for public office to effect policies directly, not book bans and death threats.

This brings me to the actual strategy that is at play here, which is something I call the “Anger & Fear Engine.” This goes to something that most people understand, which is the fight/flight/freeze mechanism. For many years, people only thought of the fight and flight aspects of it, and I suspect that’s because they rhyme and it’s easy to remember, but in all actuality, when an organism is threatened, it will actually either run away, fight to defend itself, or freeze and get either ignored or attacked. Plenty of people know what it’s like to automatically freeze in a moment of surprise, especially if it’s scary. The fight/flight/freeze mechanism is a very primitive neurological response that is normal in human development, and something humans share in common with almost all other living creatures.

Anger is generally a secondary response that puts one on the offensive after something has initially put one on the defensive. One gets mad when made to feel afraid, vulnerable, betrayed, insulted, offended, disrespected, rejected, inferior, etc. All of those things instantly make people feel bad about themselves, at least until they’re done processing what is going on, at which point the fight/flight/freeze mechanism kicks in. Anger occurs along with the adrenaline rush that hits when that “switch” is “flipped” from feeling compromised to going on the offensive.

If you opt for fight, you’ve taken that defensiveness and flipped it to going on the offensive. If you opt to flee or freeze, the problem is likely to remain unresolved, at least temporarily. Sometimes you need to retreat and regroup before you know how to most effectively go on the offensive and fight back. Flight can serve a constructive purpose if it buys you the time to figure out what you need to do and what tools you will need to fight back and win. This is the primary reason why most of my clients do not sign agreement to any important documents when they are presented; we take our time to review them outside of any meetings when we have time to sit and focus on what they actually say before responding to them in writing with any signatures. Freezing may buy time if it doesn’t result in getting attacked; if anything, it can buy time until an opportunity to either fight or retreat presents itself.

Dr. Martin Luther King said, “The arc of the moral universe is long, but it bends towards justice.” Those words entirely capture the amount of time it takes to do a good job of gathering the necessary data and documents to inform an appropriate program of instruction for a student with disabilities, much less engage in any enforcement mechanisms that might also be necessary to make that happen.

British film producer Peter Brook is quoted as saying, “Violence is the ultimate laziness.” His point was that negotiations and adult-level problem-solving require a lot of serious thought that is based on a comprehensive-enough understanding of the underlying facts, which can take a long time, but bashing people over the head can take just a few seconds and you don’t have to think that hard to do it. Violence is lazy because it doesn’t include all the hard thought and collaboration that is required for peace. Have you noticed that the people who do the most complaining rarely have a workable plan to fix whatever they’re complaining about? They exist to grieve, not resolve.

Fear can become anger very quickly, and becoming angry can instill fear in others, which can prompt them to become angry as well, hence the “Anger & Fear Engine.” It’s a common psychological response to threats, but uncontained anger and violence towards societies or specific members of society are the methods of barbarians. They are the methods of the lazy or incapable. Successful strategists can manipulate environmental factors according to best practices and the rule of law such that other people’s behaviors are shaped and changed into something more conducive to a healthy, thriving community without any fighting at all, such as when policies and practices actually meet the needs of the people. Sun Tzu asserted in The Art of War that the most successful war is the war you prevent and never have to fight.

The problem, however, is that the dangerously large minority of people whose prefrontal cortices are something akin to cottage cheese literally lack the neurological hardware to understand how to participate in the adult-level problem-solving necessary to seriously address society’s challenges. Legitimate parent advocacy requires a lot of research and writing according to science and law, not screaming in school board meetings, blocking the entrances of public libraries, or disrupting community-based literacy programs. Any organization that purports to engage in standing up for parents’ rights should be actually participating in activities that involve the actual mechanisms of democracy, or they are just fundraising off the backs of people in need without offering real solutions and telling them the only solutions are harassment and/or violence. They are selling the lazy alternative to people who don’t know how to engage in the real solution.

Moms for Liberty and organizations like it are not legitimate parent advocacy organizations. They do not assist parents in participating in the legitimate democratic processes and procedures that already exist to help parents uphold and enforce their rights. If anything, there is an effort by these groups to obstruct and/or subvert democracy at the local level by passing bigoted, unconstitutional local school board policies and aggressively attempting to uphold and enforce them, even if they are unlawful and unethical. The legitimate complaint and due process mechanisms available to parents are not utilized by groups like these, very often because they would not be successful on their merits for the types of undemocratic culture-war claims they want to assert.

It is so very important for parents to make sure that any outside providers they turn to for support are acting according to best practices and the rule of law, and are legitimately taking the needs of client families into account. Parents should be asking a lot of “how” and “why” questions as they learn how to exercise their rights under the law. The first question any parent should ask when embarking upon an effort to exercise their rights is, “May I please have a copy of my parent rights?” Start there and keep digging for more information if something doesn’t make sense. Call your state’s department of education and ask for explanations of things you don’t understand about the rules and how you can legitimately participate.

If you think your local education agency needs better board leadership, run for school board yourself or support candidates who agree with you about compliance issues that affect your children and local community. The only way to preserve democracy is to participate in it, which means voting, running for office, and availing yourself of complaint and due process procedures as appropriate to each circumstance to create the changes in the world you want to see. Throwing a fit and demanding that everybody else force reality to bend to your will isn’t democracy at all.

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Technology and the Intersectionality of Larry P.

Image credit: Fibonacci Blue, Flickr (https://flic.kr/p/q3PXEY)

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.


Footnotes
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.

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OCR Complaint Results in District-wide Compensatory Education

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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.

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Interview of Rose Griffin, SLP & BCBA

Rose Griffin, SLP & BCBA


Anne Zachry
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 podcasts 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 [*] 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.

Today is September 27, 2022. This post and podcast is titled, “Interview of Rose Griffin, SLP & BCBA,” which was originally recorded on August 29, 2022. In this podcast, I interview Rose Griffin about her past work in the public education system and the work she is doing now to educate professionals and parents to support children with special needs to address their challenges at the intersection of communication and behavior.

We’re here with Rose Griffin, who’s a speech language pathologist as well as a board certified behavior analyst. Correct?

Rose Griffin
That’s right, yes, less than 500 of us in the world. So …

Anne Zachry
Yeah, you’re a … you’re a rare species, and you’re very valuable. The crossover between your disciplines is really very valuable. I have another colleague, relatively local to me, who’s an OT and a BCBA. And …

Rose Griffin
… oh, yeah, that’s very rare. I probably know them. There’s not many of those at all.

Anne Zachry
Yeah … and, and so you know, her whole thing is, you know, kids, especially on the autism spectrum, that have sensory integration issues. And the degree to which that interferes with behavior, or it creates sensory-seeking behaviors that interfere with learning in the school setting, or whatever the case may be, but that sensory-behavior connection is where, you know, she really knows her stuff. And that’s very rare that I run into people who have, you know, those dual disciplines and understand the connections. And I think when you and I first started communicating about doing this podcast together, you know, my mind immediately went to functional communication. Because …

Rose Griffin
Yeah!

Anne Zachry
… because we have a lot of kids who … they have the speech and language services to teach them, you know, often in a small group or an individual one-on-one situation, sometimes pushed into a classroom situation, but most often not in my experience, and then somehow they’re supposed to generalize that to the world at large. And …

Rose Griffin
Right! It’s supposed to miraculously happen. Yeah.

Anne Zachry
Yeah, it’s just gonna be osmosis or something. And so, you know, there needs to be that explicit reinforcement of the behavior in the in vivo context, in order for them to make the connection between what you’re talking about in a therapeutic situation and real life. And that’s where the the behavioral supports come in, where functional communication skills are used as behavior strategies in an ABA based program. And so that in my mind, that’s that was where everything immediately went when I saw your qualifications, because I’m like, “Oh, she’s in that nexus of, you know …”

Rose Griffin
Heh, heh – yeah.

Anne Zachry
… where the … because all, all communi-, what is, what is the saying? “All behavior is communication”?

Rose Griffin
Right. There’s that saying. They say that a lot. Um-hmm.

Anne Zachry
And all language is a learned behavior. So you know that the language-behavior, there really is no divide. And …

Rose Griffin
Um-hmm.

Anne Zachry
… it’s just … it’s more as … it’s different nuances of the same thing parsed out and, and so what have been your experiences? Because, I’m assuming you go into the schools or you do work with the schools as well.

Rose Griffin
Yeah, so, for 20 years, I worked as a school based speech language pathologist …

Anne Zachry
Okay.

Rose Griffin
… and I started my own business called ABA Speech five years ago. And I actually just decided in May to step away from the schools to focus on my business where I offer courses, and I have a podcast called Autism Outreach, and we have products, but I still love to be in touch with the schools. So it looks a little bit different now. Now, I’m just kind of seeing a handful of a private clients. But yeah, for 20 years, I worked as a school-based SLP. And I really loved being able to provide therapy in that natural setting. And I really did a lot of push-in therapy into the classroom and some students that I needed to see in my office, but you know, I worked in middle school/high school, so maybe I had kids with selective mutism. Or maybe I had a kid who was stuttering or maybe the classroom was really loud and I needed to pull a student …

Anne Zachry
Right.

Rose Griffin
… into my office to give them a break from the classroom.

Anne Zachry
Right!

Rose Griffin
But I’ve definitely tried to push in and do like a group so I can model therapy strategies for the teacher and one on one staff and things like that. Yeah.

Anne Zachry
Well, and the push-in model is so much more supportive of generalizing those skills from a pull-out situation to real life that gives you the opportunity to go into the real life classroom and say, “Okay, here’s where you need to do this, bro,” you know?

Rose Griffin
Yeah! No, absolutely!

Anne Zachry
You’re coaching people on the pragmatics, you know, people who have a hard time reading the room?

Rose Griffin
Yeah, that’s always … Yeah, that’s what … that’s hard. That’s ever-changing for everybody. I had some students that had more direct instruction, more traditional type ABA services, and I would go into the classroom and see them in their teaching area. And every student was just so individualized.

Anne Zachry
Exactly!

Rose Griffin
But, I tried to do whatever works for the student.

Anne Zachry
That makes sense. That totally makes sense. And that’s really how it should be done. It is supposed to be individualized.

Rose Griffin
Yeah!

Anne Zachry
I just … I think it’s a, it’s a fascinating overlap that a lot of people fail to appreciate … that, that connection between language and behavior, and how much …

Rose Griffin
Oh yeah.

Anne Zachry
… how much, you know, how often do we say, “No hitting; use your words,” and yet, that connection still doesn’t get made in people’s minds? You know, it’s like, well, after they’re toddlers, that doesn’t count anymore. It’s like, “No, it always counts! …”

Rose Griffin
Right!

Anne Zachry
“… That never goes away!”

Rose Griffin
That’s my own kids. Yeah, they’re like, you know, in upper elementary school and middle school …

Anne Zachry
Right. Well, and I have to say, you know, I mean, I use these skills just as much to navigate the politics of the IEP process, as …

Rose Griffin
Um-hmm.

Anne Zachry
I’m using the same skills to deal with the adults in the situation, and to try …

Rose Griffin
Yeah. Yeah.

Anne Zachry
… and get an IEP to say what it needs to say,

Rose Griffin
Um-hmm.

Anne Zachry
… without ruffling feathers, and without people getting their feelings hurt …

Rose Griffin
Oh, yeah!

Anne Zachry
… and taking things personally, when it’s about the construction of a legally binding document and not anybody’s personality, and …

Rose Griffin
Ha, ha, yeah.

Anne Zachry
… and so it’s, you know, having to dance around all of that, I find that … I mean, that my … I have my master’s in educational psychology. I’m qualified to go in and do school-based …

Rose Griffin
Yeah.

Anne Zachry
… you know, behavior assessments, but I don’t go in as an outside assessor. I’m there as the lay advocate. And so I keep that hat on.

Rose Griffin
Oh, okay. Yeah.

Anne Zachry
But I’m going in as an informed lay advocate, and I’ve also paralegaled all the way up to the Ninth Circuit of the Court of Appeals. So the only place I haven’t gone yet is the US Supreme Court. And so, so I … I’m coming at this from both a compliance standpoint, and from a science standpoint …

Rose Griffin
Uh-huh.

Anne Zachry
… that the law mandates the application of the peer-reviewed research to the design and delivery of special ed.

Rose Griffin
Um-hmm.

Anne Zachry
But we don’t have any mechanisms in place to really truly facilitate that. And so when I find people who have extraordinary qualifications, who have worked in the school setting, who have like, “Okay, I found my work-around.” You know, it’s you’re having to drag the science into a setting that really isn’t designed for it …

Rose Griffin
Um-hmm.

Anne Zachry
… and, and trying to implement it in a situation where you’re having to sell everybody on the inside of the legitimacy of what you’re trying to do …

Rose Griffin
Um-hmm.

Anne Zachry
… because it’s not how it’s always been done.

Rose Griffin
Right.

Anne Zachry
And so, there’s a lot of politics and culture, you know, internal district culture issues that have to be overcome before … you know, sometimes … the science will be legitimately applied. And so I see varying degrees of success with kids who have IEPs that call for certain things, but they jump from one school district to another. And what that looks like in one place to a different place are two totally different things. And the child does better in one setting versus the other with things that say they’re … identically described on paper.

Rose Griffin
Um-hmm.

Anne Zachry
And it really does come down to quality control at the individual school sites. And what I one of the questions I wanted to ask you was about fidelity and data collection …

Rose Griffin
Hmm.

Anne Zachry
… because one of the biggest issues that I’ve run into in any aspect of special ed is the validity of how the data is being collected, basically going to the measurability of the goals, whether or not they’re legitimately measurable.

Rose Griffin
Um-hmm.

Anne Zachry
Because, back in the 90s, to backtrack a little bit, there was some kind of workshop for teachers somewhere, and I’m not sure who the entity was that put it on, I have my suspicions. There’s organizations out there that tend to disfavor special ed …

Rose Griffin
Oh, okay.

Anne Zachry
… as something no government should be doing.

Rose Griffin
Um-hmm.

Anne Zachry
And there’s a number of those individuals, certainly not the majority of people in public education, but there are a number of them who are employed within public education, who truly do not believe that this is how government resources should be expended. And they’re in the camp of Betsy DeVos, who wants to dismantle the U.S. Department of Education.

Rose Griffin
Yeah.

Anne Zachry
So, they’re there to undermine it from within and prove that somehow government doesn’t really work. “Well, yeah, not when you’re there, doing that kind of stuff!”

Rose Griffin
Uh-huh.

Anne Zachry
And so there’s people of that ilk who are peppered throughout the system, who are trying to prevent anything that’s going to produce a system of accountability, anything that’s going to create an audit trail. This is why you haven’t seen all of the business automation technologies that were perfected in the private industry over the last 30-40 years. They still have not been deployed throughout all of our public agencies …

Rose Griffin
Um-hmm.

Anne Zachry
… because then you … the people who are misappropriating funds and doing illicit things, they have no shadows to hide in anymore.

Rose Griffin
Hmm!

Anne Zachry
And similarly, when ABA showed up in the special ed arena with all of the data collection and doing it according to a scientifically valid method …

Rose Griffin
Um-hmm.

Anne Zachry
… well, that meant that you were going to take data on everybody blowing it …

Rose Griffin
Um-hmm.

Anne Zachry
… and you were gonna … you were gonna create evidence that families could use to hold their school districts accountable if you actually took data on what was really going on. And you know, as … as a BCBA, I know you know this, that it’s not just … when you’re doing a truly scientifically rigorous ABA program, you’re not just taking data on how the individual responds to the intervention, you’re also taking data on how the implementers are implementing the plan with fidelity. You’re taking fidelity data on how well the plan is implemented, because it can only fail for one of two reasons: either a design flaw or an implementation failure. So you’ve got to have data on “Is the design working?”, which you only know, if you’re trying to implement the plan, according to its design. We have seen a huge, huge push against taking fidelity data as part of any child’s behavior intervention plan in an IEP because of the audit trail it will create, and the fact that it will capture people not doing the job rather than you know, using it as a quality control measure. And so it seems to … in my experience, what I’ve run into it, you know … and bearing in mind that I only get contacted by people whose kids IEPs are just gone off the rails, and it’s a horrible situation.

Rose Griffin
Yeah.

Anne Zachry
Nobody calls me up to tell me how great is going. So I’m only coming into the worst of the worst. But stepping into the worst of the worst, what I find are concerted efforts to cover things up when things have gone wrong, and then try to create a some sort of legal defense that shifts the blame away from the school district. And, you know, one of the preemptive legal defense strategies that their lawyers will, will have them do is like take as little data as possible. And, and so you have this … this energy against valid data collection and fidelity measurement that undermines the integrity of the process, even though the law mandates the application of the science. And that’s not the science, you know. And so, families … but families are the enforcement arm of the law, because you know, we’re a government of the people. So if … there’s no, you know, special ed police running around to make sure everybody’s doing it the way it’s supposed to be done. The only way the law gets enforced is when somebody breaks it and a parent reports them.

Rose Griffin
Hmm.

Anne Zachry
And so, we have parents having to bear the burden of understanding what the science is to even be able to know that it hasn’t been applied. And we have people in the schools who don’t know the science, much less how to apply it. And so we’ve got a lot of changes coming up on the horizon that we see are inevitable in that regard, but having worked for 20 years in the public schools having tried to apply the science to the benefit of children, what have your experiences been of trying to stick to the … to the fidelity of the science that’s behind what you’re doing? Has that been a challenge for you?

Rose Griffin
Yeah, I’ve had great experiences. Yeah, I’ve been a school-based speech therapist and have worked really hard to build rapport with families and teams, and, yeah, we really help students and support them in that natural environment of a public school. So yeah, on my end, it’s been really, it’s been really positive for my students to get those services within public school. It’s been great.

Anne Zachry
Have you had a hard time, though, with respect to the peer-reviewed research and being able to bring in the current research into the school setting and implement the new stuff?

Rose Griffin
No, and it might just be where I live, you know, I live in Cleveland, Ohio, a suburb of that. And we have a lot of really great providers here. And, yeah, I’ve just had really great experiences. And haven’t really had …

Anne Zachry
That’s fabulous to hear, because I’m telling you this, this is my uphill battle all the time. And I’m in California, which is one of the most progressive and heavily regulated states in the country for special ed.

Rose Griffin
Oh yeah. Wow!

Anne Zachry
I mean, we kind of set the tone for because we have more special ed due process cases every year …

Rose Griffin
Oh, I’m sure.

Anne Zachry
… that I mean …

Rose Griffin
It’s so big.

Anne Zachry
Yeah, some states go for years without having any at all.

Rose Griffin
Right! Lucky them!

Anne Zachry
And, and so it goes to the degree that the parents don’t know their rights …

Rose Griffin
Right.

Anne Zachry
… or things are going successfully and you don’t have the kinds of challenges that you know, that other districts run into. And I think it goes to quality of leadership. So it sounds to me like you’ve been in a very blessed situation where you haven’t had to contend with those kinds of situations, which are just, you know …

Rose Griffin
Yeah.

Anne Zachry
… more, more common …

Rose Griffin
Yeah!

Anne Zachry
… than people would like to think. I mean, you know, we have…

Rose Griffin
Right. Um-umm.

Anne Zachry
… our organization was actually founded in 2003, following the death of a classmate of our founder’s nephew, who was …

Rose Griffin
Awww!

Anne Zachry
… was smothered to death by his teacher in front of everybody in the classroom during an unlawful prone restraint. And …

Rose Griffin
Oh dear!

Anne Zachry
Yeah, and …

Rose Griffin
No wonder!

Anne Zachry
… and it was horrible and … and he never went back to school after that. It was a class for emotionally disturbed children, and this teacher was …

Rose Griffin
Oh dear!

Anne Zachry
… supposed to be there to help all these children with these mental and emotional health needs get better. And, instead …

Rose Griffin
Umm, oh dear!

Anne Zachry
… she was this authoritarian monster who just bullied them. And … and so, you know, these things do happen. And it’s not as rare as people would like. That case actually ended up being included in … and I’ve got written in the blog post that goes with this podcast, I’ll include links for it …

Rose Griffin
Yeah.

Anne Zachry
… we have an article about this from a while back, but that just explained our history and how this all happened. But this particular child’s family, he was a foster child. And so the moment his life was terminated, so was his foster mother’s parental authority. And so she couldn’t do anything to hold anybody accountable, because she no longer had parental rights at that point. She had no authority and no standing.

Rose Griffin
Um-hmm.

Anne Zachry
But, a few years after that, Congress had commissioned a study on the use of seclusion and restraints and special ed in the public schools. And, it was public schools in general, but it turned out that special ed kids were the ones who are most commonly restrained and secluded. And, this young man’s case was in part of the that federal investigation.

Rose Griffin
Hmm!

Anne Zachry
We were shocked to see it, because it’s the reason why we founded our organization. It was the, you know, the final straw …

Rose Griffin
Um-hmm.

Anne Zachry
… that made us pull that plug. But, to see that in the federal report, and it was actually, like, one of the feature cases, and they actually had the foster mother go to Washington, DC, and testify before Congress about what had happened.

Rose Griffin
Hmm!

Anne Zachry
And, what they determined was the teacher had never been held accountable, that she had never received any kind of negative consequence for any of this, and was able to leave the state of Texas and go to Virginia. And, at the time of the hearing, when this foster mother was testifying, this teacher was only 45 minutes away running a special ed classroom in Virginia from where Congress …

Rose Griffin
Hmm!

Anne Zachry
… was hearing testimony about how she had murdered this child and got away with it. It’s a failure of multiple systems. But this goes to our whole thing that special ed is really … the work that we do in advocacy to address these kinds of problems is really part of a larger social justice issue. Because …

Rose Griffin
Um-hmm.

Anne Zachry
… it wasn’t just the special ed system that failed.

Rose Griffin
Um-hmm.

Anne Zachry
It was the foster care system, it was the criminal justice system, it was the teacher credentialing system, it was … there was all kinds of parts of the system that broke down that allowed this to happen. And a lot of it goes to the bureaucracy and the lack of communication. And if all of these agencies were actually interconnected in a wide area network, enterprise-class computing environment, the way that, like Walmart, or Sanyo, or UPS Freight, or any of these big global organizations that have these huge computing environments … they overcame these obstacles decades ago, but we don’t have the same consistency of flow of information. And because of that, we’ve got consumers having to go to 15 different agencies and applying for 15 different types of service, you know, and maybe you’re talking about somebody in a wheelchair with an oxygen tank, who has to go trucking around all over the place, instead of the money following the consumer, the consumer has to go chasing after the money. And so we’ve got a lot of organizational defects, you know, when you start looking at … you talk to … start talking about a plan and looking at a behavior plan versus a plan for the operation of an entity, it really isn’t that remarkably different. And does this plan actually support the functions of the behaviors that you know … do these behaviors support the function of the organization? Are we rewarding …

Rose Griffin
Hmm!

Anne Zachry
… are we reinforcing the right behaviors in this organization? And so for me, I think that there’s also a carryover of what you do into the organizational structure of, you know, in the organizational cultures. I know that ABA is used very much in an industrial sense, by private industry, but to create …

Rose Griffin
Um-hmm.

Anne Zachry
… you know, positive workplace environments. And do you see a value of your profession and people in your profession, you know … crossover between both, really … of going in and doing professional development and positive culture building and in help healing the cultures of some of these environments where people are not invested in their constituents?

Rose Griffin
You know, yeah! There’s a whole branch of ABA called OBM. Organizational Behavior Management, I think it’s what it’s called.

Anne Zachry
Yep.

Rose Griffin
I don’t have any experience with that. But I think it makes a lot of sense to use the science and there are people that specialize in just doing that. And they’re doing … going into organizations helping with the culture, helping streamline workflows, and I think that is definitely something that’s positive. There’s so many different things that you can do with the science of applied behavioral analysis …

Anne Zachry
Oh, I know!

Rose Griffin
… autism is just one very small area. So …

Anne Zachry
That’s what I tell people!

Rose Griffin
People make mistakes about that, as well.

Anne Zachry
I tell people that. I’m, like, look! ABA is a science; it is not an autism service.

Rose Griffin
Um-hmm!

Anne Zachry
It’s the science behind certain autism services that address behavior, but it is not an autism service, per se. And a lot of people don’t realize that I’m like, no ABA applies to crustaceans and computer code …

Rose Griffin
Ha, ha, yeah!

Anne Zachry
… you can analyze anything that behaves and there’s always a cause for everything, you know, and everything serves a function, and so that’s something that I think that there needs to be more discussion around and more research done into of how that organizational aspect of ABA can be used as part of the healing process of all of these things that we’re dealing with in our culture right now. I mean, all of the conflicts and the dividedness, and the fights and, you know, it just I think that ABA sort of takes the temperature down because you’re doing nothing but black and white neutral statements of fact …

Rose Griffin
Um-hmm.

Anne Zachry
… and only things that are objectively observable, like this is what we know to be true. And I think that bringing the conversation back to … I mean … getting away from the hysteria and coming back to the rule of law and back to scientific method, both of which are evidence-based, you know … you have to use logic statements … they are very similar in to how you execute both … that calmer heads can sit there and do that kind of black and white analysis and like, “Okay, let’s get to the to the bottom line of what is, and then we can decide how we’re going to emotionally react to it.” But right now …

Rose Griffin
Hmm! Um-hmm.

Anne Zachry
… we’ve got everybody reacting to the data rather than to the outcome of the analysis.

Rose Griffin
Um-hmm.

Anne Zachry
… that, you know, people are pre-judging what a piece of data might actually mean rather than putting it all together and reaching a logical conclusion, “Okay, here’s the story is told by the evidence.” And I think that we do our young people a huge disservice by not teaching them to think that way, as just simply part of curriculum. I think that there’s a huge value in teaching people about ABA as part of like a high school psychology class, I think that it’s a skill that is …

Rose Griffin
Um-hmm.

Anne Zachry
… all it is, is the ability to see what is without cluttering it up with a bunch of other superfluous details. It’s about how to prioritize your data and focus on what’s the most important thing …

Rose Griffin
Um-hmm.

Anne Zachry
… and engage in that neutral fact-based decision-making. And I think that if that were taught as a skill just in, in general, for all kids, I think that would help develop them, especially in high school, when that prefrontal cortex is starting to come online, and they’re starting to think more abstractly, and they’re looking for that kind of structure to structure their thoughts. I think that that’s something that we need to start really thinking about, as we we try to … to develop tomorrow’s leaders and problem solvers. That ABA, just as a skill, as a science …

Rose Griffin
Um-hmm.

Anne Zachry
… is valuable, just as much as it is to learn about the law of gravity.

Rose Griffin
Heh, he, um-hmm.

Anne Zachry
You know, I think that we focus on the physical aspects, and we consider the hard sciences more legit than the soft sciences. And I’m like, I don’t see how you think that ABA is not hard science …

Rose Griffin
Um-hmm.

Anne Zachry
And so I’m, I mean, what are your thoughts about making the science just more part of a mainstream part of the human experience and making it more part of the … of just common knowledge? How valuable do you think that is?

Rose Griffin
Yeah, I mean, you know, with my business at ABA Speech, I disseminate information daily. And I don’t always even say that it’s ABA. But I just talk about the way that I use the science of applied behavior analysis is by helping autistic learners find their voice and increase their communication skills. And so everybody that is a BCBA definitely has the opportunity to disseminate and to share how they’re using the science to help support students or whatever facet, they are included in. So I think that being able to share that is important. And that’s what I do through my online business. So it’s important to me to share that.

Anne Zachry
Yeah, I think the more that the folks I work with understand the science that is being applied to their kids, the more comfortable they are with it, and it logically makes sense to them. And I have moms who will … are like Goddesses at coming up with goals and how to track the data …

Rose Griffin
Ha, ha, ha!

Anne Zachry
…. and how you know which method, you know, “I’m gonna do DRI or a DRA.” And I’m like, “Okay.”

Rose Griffin
Ha, ha, ha!

Anne Zachry
And they’re like, you know, honorary BCBAs after a while, and I …

Rose Griffin
Hmm!

Anne Zachry
… it’s because all it really does is measure what already is.

Rose Griffin
Um-hmm.

Anne Zachry
It’s not like you made up something new. you’re just trying … it’s a way of documenting what’s happening in the environment, and then what to make of that data once you’ve collected it. So it’s not like you’re making something new out of what is or, you know, inventing a new chemical or something. It’s looking at, “Okay, here’s what’s going on in this actual real world environment,” you know, and then to the degree that language plays into it, which is always, you know, usually part of it.

Rose Griffin
Hmm!

Anne Zachry
And so to circle back around to the school and the speech and language and the ABA overlaps, do you find that it is more efficient for you to be able to wear both of those hats? Or do you find that it can be equally effective to have a team where you’ve got a BCBA and a speech-language pathologist working together? I mean, what do you … how do you see, you know, all the different ways to still come up with the same information that a team might need with respect to behavior and communication?

Rose Griffin
Yeah, in a school setting, you’re typically going to have one person that’s a speech therapist, and one person that’s the BCBA, and they can work collaboratively together with the students, the family, the teacher. Even though I’m dually certified, my role on the team in this particular job setting was as a speech-language pathologist …

Anne Zachry
Got it.

Rose Griffin
… so we actually had an outside consultant that we would work with. And it’s so much easier for me to work with outside consultants, because I’m a BCBA, so I understand all the different things that they’re talking about. So is it easier for me to work with consultants, and to make that a cohesive team? It absolutely is. But you know, being dually certified, allows me to work with ABA providers that want to offer speech therapy or offer consultations, or I help different ABA providers with professional development about communication. And so being dually certified is a very special niche area. And I can help businesses and families and individuals in a very specific way. But if you have a team and you have a few therapists, and you have a BCBA, and they’re able to collaborate, that’s just as impactful.

Anne Zachry
Yeah, it does … I mean, it’s sort of like, well, you have all your eggs in one basket on the one hand …

Rose Griffin
Ha, ha, ha.

Anne Zachry
… but at the same time, you’re also got a more efficient a … you know, a faster machine and in a manner of speaking, because you’re not having to do the … everybody on the team coming together and collaborating. It’s all in one brain and they can just, “Blech, there it is.”

Rose Griffin
Ha, ha, ha.

Anne Zachry
So, I mean, I, you know, and I totally get that. And I mean, I’m in a similar situation in that I’m in the nexus between the legal side of it as a paralegal and a lay advocate …

Rose Griffin
Hmm.

Anne Zachry
… but also coming from the scientific side of it with my master’s in educational psychology and all the work that I’ve done in that regard …

Rose Griffin
Um-hmm.

Anne Zachry
… and so I’m straddling that nexus between where normally you would have to have an attorney who brings in an expert to tell them …

Rose Griffin
Right.

Anne Zachry
… the science part of it. So you’ve got the expert who knows the science, and you’ve got the lawyer who knows the law, but sometimes there’s things they miss, because they’re talking apples and oranges. And they don’t, you know … and it’s not quite the same, because I think the connection between speech and language pathology and behavior is like way closer. I mean, it’s really just, you know, two sides of the same coin.

Rose Griffin
Um-hmm.

Anne Zachry
Whereas, what I’m doing, I’m really having to straddle two different universes and trying to get these people to understand each other’s professional lingo, because, you know …

Rose Griffin
Um-hmm. Yeah!

Anne Zachry
… you know the educators have their their jargon. And, the lawyers have their jargon. And, a lawyer may be able to identify that, you know, a timeline was violated, or, you know, “Well, this kid’s nonverbal and you didn’t do a speech and language assessment at all. How is this possibly a comprehensive triennial evaluation?” You know, it’s like … when it’s really over the top egregious stuff like that, a lawyer will recognize the failure.

Rose Griffin
Yeah.

Anne Zachry
But, when you’re talking about, “Well, this child has the potential to make X amount of growth in reading ability over the next year, but you’re not targeting an outcome that’s that aggressive; you’re low-balling this kid on his IEP goals,” a lawyer is not going to look at an IEP and be able to recognize that.

Rose Griffin
Um-hmm.

Anne Zachry
You’ve got to have somebody who’s an expert in the data and the assessment stuff to be able to look at, “Okay, well, what did the assessment data say about this child’s capacity to learn? And how …” you know, “… and where their baselines were at the time everything was written, and how aggressive is this goal relative to their baselines based on what we know about their capacity to learn?” So you’ve got a scientific analysis that has to happen that a lawyer is not going to be able to do, but then you have educators who come into it and don’t know the legal side of it. And so they’ll see that discrepancy, but they don’t know how to advocate for the right thing. And a lot of times, if they’re going to a school district administrator who doesn’t know that, either, they’ll just “Oh, I guess that’s just the way it is.” It doesn’t occur to them that there’s something that can be done, or that the law requires more …

Rose Griffin
Um-hmm.

Anne Zachry
… and they … and it comes down to professional development. It’s not because anybody has ill intent. It’s not because somebody is trying to hurt a kid. More often than not, what I run into, when I run into the challenges that I run into, it’s not because somebody’s mean and they want to hurt somebody. It’s because they don’t know …

Rose Griffin
Um-hmm.

Anne Zachry
… and they don’t have the resources, and nobody told them. You know, I think it’s exciting for me to hear from professionals who come from schools where that’s not so much the case. That you’re … you’re in a situation where you’ve got a really progressive team. And I’ve talked to other educators who come from really progressive public schools and school districts where, you know, everything is evidence-based, and you’ve got a really amazing people who are pushing forward, really progressive and collaborative types of projects that include the families and don’t vilify them. But, you still got some really weird, old, cronyistic, “Boss Hogg/Roscoe P. Coltrane” kind of stuff going on out there, too.

Rose Griffin
Ha, ha, ha.

Anne Zachry
And so it’s a mix, you know? Iit’s a mixed bag. And I think that where you are has a lot to do with it. So it’s exciting to hear. And you said, you’re in Ohio.

Rose Griffin
Yes, I’m in Ohio. So yeah, I’ve had really positive experiences. It’s been … it’s been really wonderful. I was sad to step away from the schools after 20 years, but I just … my business has grown so much at ABA Speech that, you know, it’s just what I needed to do. So …

Anne Zachry
That’s exciting to hear too. Because you know, all growth is just part of life. You have to grow and evolve into something else.

Rose Griffin
Um-hmm.

Anne Zachry
And whatever skills you acquire in one situation, and the benefit you serve to people while you were there just equips you to serve other people in a different kind of way better, stronger, you know. And so it sounds like that’s what you’re doing. So with your practice, now, you’re mostly working with private families, and then consulting with organizations?

Rose Griffin
Yeah, so I divide my time. My podcast, Autism Outreach, is a big part of what I do. Yesterday, I batched three episodes. And so we have monetized my podcast. And so we offer it for continuing education units for … geared towards speech-language pathologists.

Anne Zachry
Nice!

Rose Griffin
And then I do some therapy. I see a couple clients privately, and then I do some telehealth. I’m actually licensed in Washington State.

Anne Zachry
Nice!

Rose Griffin
And so I act in the capacity of helping ABA centers sometimes provide speech therapy. And then sometimes I just do consultations for complex communication cases. And I do a lot of presenting. I do a lot of speaking about working on autism and communication and how to help students at various levels along their communication journey. And we offer courses. That’s the biggest thing that we do is we offer courses about autism that are geared towards professionals and parents that are a little familiar with the science of applied behavior analysis, would probably be the best way to describe it. And we’ve just had a great chance and opportunity to be able to reach people through our courses. That’s been really something that’s been very rewarding.

Anne Zachry
That speaks to the concern I was having before about, you know, just how difficult it is to get the science pushed into the schools.

Rose Griffin
Really?

Anne Zachry
So, people who are doing the kind of work that you’re doing …

Rose Griffin
Yeah.

Anne Zachry
… and be able to reach through to them through the internet and nonetheless get the information out to these people. So they have access, I think that is so incredibly important. And that’s going to be such a huge part of what makes things better is people like you doing the kind of work that you’re doing, because you found a workaround.

Rose Griffin
Right!

Anne Zachry
It’s like, “Okay, well, maybe I’m not gonna go down to the local school district and hold a workshop today. But I don’t have to,” you know? “I can do it myself …

Rose Griffin
Right!

Anne Zachry
… and put it out there, and people can get their continuing ed units.” And then, you know, Bob’s your uncle, there it is.

Rose Griffin
Yeah! Yeah!

Anne Zachry
And so I think that that’s very encouraging,

Rose Griffin
Because our courses are offered for speech language-pathologists for their CEUs. Also, for board certified behavior analysts, they’re called ACEUs. And then also, we do general certificates for teachers and parents. And that’s been really great. So it’s really just a mix of I do live presentations. But then I also have these courses that are usually on Evergreen. And we have a new course coming out in September, that is called The Advanced Language Learner. And that is going to be about students who are using two to three words on their own, and how to help them go beyond basic communication skills. So I’m very, very excited and have been working diligently on that launch. So that will happen mid-September.

Anne Zachry
That sounds really exciting! All of that sounds amazing and wonderful. So, well, I’m excited to be able to share that with our audience, because I know there’s gonna be a lot of families out there who will benefit from it. I mean, by no means are our entire caseload, you know, kids with autism. That’s some, you know … a good fair percentage of our caseload.

Rose Griffin
Um-hmm. Yeah.

Anne Zachry
But, you know, and that’s … they’re not the only kids who would benefit from something like that either. And then I have lots of kids with other types of issues …

Rose Griffin
Yep. Um-hmm.

Anne Zachry
… that that would really speak to their needs as well, and that knowledge being out there for the professionals in their lives, as well as their parents. The parent education piece is really important. And I … so here’s a thought …

Rose Griffin
Um-hmm?

Anne Zachry
The implementing regulations of the IDEA include in its description of all the different things that can be related services … like speech and language, or transportation, or OT, or whatever …

Rose Griffin
Um-hmm.

Anne Zachry
… parent training and counseling is also listed. And …

Rose Griffin
Hmm!

Anne Zachry
… and so some … and the purpose of that being as a related service is so that parents can understand their children’s disability better and be more effective participants in the IEP process and understand the IEP process … because they have federally protected rights to informed consent and meaningful parent participation in the IEP process, and they can’t participate meaningfully if they don’t understand.

Rose Griffin
Hmm.

Anne Zachry
So, the parent counseling and training component is to help the parents get up to speed on what’s going on with their kid based on what the assessment … help them understand the disability, and also, you know, how to support and be part of the IEP team.

Rose Griffin
Right.

Anne Zachry
And, be able to be a collaborative member of the whole process …

Rose Griffin
Um-hmm.

Anne Zachry
… and have that meaningful parent participation where they’re not in there, just you know, having hysterical fits, because they don’t understand and nobody can get anything done, you know? Because that can happen. And so, I’m wondering how easy it would be for a parent to be able to get the cost of doing training through your program covered as an IEP cost?

Rose Griffin
Yeah, you know, I actually did have somebody reached out from California …

Anne Zachry
Where I’m at.

Rose Griffin
… where they wanted to sign their parent up for this parent training. That they wanted to know if I was a provider, which I think is something that’s very specific to California and the region.

Anne Zachry
Right, you have to be …

Rose Griffin
I have a friend that is an SLP.

Anne Zachry
Um-hmm. Yeah.

Rose Griffin
And I was, like, “Oh, I’m not covered on that.” So, I mean, if there’s any way that I could be covered on things like with that, she said that I would have to have a physical location in California …

Anne Zachry
No, no, no, no!

Rose Griffin
… which I’m not going to do from Ohio.

Anne Zachry
Here’s what you do. You do it as a reimbursement model. The parent pays you directly …

Rose Griffin
Oh!

Anne Zachry
… and the parents simply gets reimbursed.

Rose Griffin
Yeah!

Anne Zachry
That’s how you work around that requirement.

Rose Griffin
Okay!

Anne Zachry
Because, what you’re talking about is in California, in order for an agency to contract with the school district to provide anything special ed-related …

Rose Griffin
Yeah.

Anne Zachry
… they have to be a non-public school or a non-public agency. There’s a license you have to get from the California Department of Education.

Rose Griffin
Hmm.

Anne Zachry
And you have to have all this, like, this behemoth of a red tape process. It’s almost not even worth it for a lot of people …

Rose Griffin
Okay. Right.

Anne Zachry
… and which is why it’s so hard to find people to do it.

Rose Griffin
Yeah.

Anne Zachry
The workaround is if you have someone in private practice, and the parent simply pays and then gets reimbursed. If they have the means to do that, then a reimbursement model is the workaround for those kinds of things in special ed and that’s … you can write it into the IEP that way, or sometimes it will come up as part of a settlement agreement. And …

Rose Griffin
Okay, because I’ve had some people reach out to me that way, from California, but I’m just I’m not there. I’m not licensed in California. And …

Anne Zachry
You could do it remotely. And yeah, I mean, there’s your answer. So, if that helps you, you know, serve families in my state, that would be great! Ha, ha, ha!

Rose Griffin
Okay, good to know.

Anne Zachry
Yeah, no! There’s absolutely a work-around.

Rose Griffin
We definitely have courses that parents really, you know, enjoy, so … and just helps them feel like they have a better understanding of what’s going on in therapy, even if they’re not going to be the therapy provider themselves …

Anne Zachry
Right.

Rose Griffin
It just gives them more of an overall …

Anne Zachry
Well, yeah. That’s the whole point of understanding what’s really going on and why these things are important …

Rose Griffin
Um-hmm.

Anne Zachry
… and why it’s important for them to …

Rose Griffin
Yeah.

Anne Zachry
… you know, facilitate it and, you know, be part of the team to make it happen. You know, I would say to any parents who may have already paid for your services, especially if it’s been within the last year or two, you know, and a lot of people coming off the pandemic have had to go out and privately fund a lot of stuff that they wouldn’t have otherwise expected to have to do …

Rose Griffin
Um-hmm.

Anne Zachry
… that, they might want to save those receipts and their proofs of payment. And if they are …

Rose Griffin
Right.

Anne Zachry
… in any kind of dispute with their school districts trying to get services that they’ve otherwise had to get from you, that …

Rose Griffin
Right.

Anne Zachry
… if they were out of pocket for that, that that could be a reimbursable expense. And if they are going down that route, they do have an attorney or someone helping them with that process to have that person to look at the situation, the facts of their case, and how much they’ve had to spend on that, to see if it’s recoverable. Because you know, in very … a lot of instances, I would think that not just the speech and language or the ABA or any of this … that stuff you’re doing, but also the parent training could be a recoverable expense, because of that provision under the IDEA a that provides for parent training and counseling. So, just something to keep in mind. It could get get written into a kid’s IEP, and then, you know …

Rose Griffin
Right.

Anne Zachry
… if it’s not California, the district could potentially contract with you directly. Yeah, because we’re regulated …

Rose Griffin
Right.

Anne Zachry
… we’re so regulated. And you know, it offers a lot of good protections that the federal law doesn’t offer. But it sometimes …

Rose Griffin
Um-hmm.

Anne Zachry
… also creates additional bureaucracy. It’s like “Really?” Yeah, in other states, that wouldn’t necessarily be the case. And you could actually get your product and your services written directly into a kid’s IEP …

Rose Griffin
Hmm!

Anne Zachry
… and get funded by the district for that. Another …

Rose Griffin
Um-hmm.

Anne Zachry
… thing that I’ve seen with people doing similar kinds of programs like yours is that sometimes they will be able to get a contract with a school district to use the product, like on a licensed basis, where …

Rose Griffin
Hmm!

Anne Zachry
… you train the speech and language pathologist

Rose Griffin
Um-hmm.

Anne Zachry
… to replicate your content in their setting.

Rose Griffin
Hmm.

Anne Zachry
And, you know, any therapies or anything that you’ve developed or any strategies you develop that are branded to you then becomes …

Rose Griffin
Um-hmm.

Anne Zachry
… it’s like … it makes me think of, for pragmatic language assessments you have was Michelle Winner-Garcia, Michelle Garcia-Winner, I never can remember …

Rose Griffin
We really don’t use her that much anymore. I mean, I think …

Anne Zachry
Yeah, but back in the day, I remember that was…

Rose Griffin
… the test for pragmatic language is the CASL. Yeah.

Anne Zachry
Well, but the CASL is a standardized measure. So a …

Rose Griffin
Um-hmm.

Anne Zachry
… norm-reference test is not …

Rose Griffin
… not observation …

Anne Zachry
going to get you …Yeah, it’s not going to give you the exact same kind of a thing as an …

Rose Griffin
Right, right.

Anne Zachry
… in vivo, authentic language sample.

Rose Griffin
We always do an observation.

Anne Zachry
Yeah.

Rose Griffin
Make sure that we’re observing in the natural environment. Yeah.

Anne Zachry
You want the language sample and … But her … the thing that I liked that she did was the “Double Interview.”

Rose Griffin
Um-hmm! In one of our podcast episodes, with Lisa Chattler. She’s actually a speech therapist. She lives in Orange County …

Anne Zachry
Oh, right on!

Rose Griffin
… and she talked about the double interview and asking questions. And, yes.

Anne Zachry
I think that’s really important, too. I mean, I think that there’s value in norm referenced standardized tests, but to us … especially when you’re talking about school psychology, because that’s more my domain, you could be a psychometrician and paint by numbers, and not understand what any of those tests do. You can go through the motions of administering and scoring that test, and that doesn’t mean that you appreciate what the data means. I actually had a case a few years ago, where we had an audiologist supposedly doing an assessment for an auditory processing disorder.

Rose Griffin
Hmm!

Anne Zachry
She was with … the district had the choice of who was going to do it. They didn’t have an audiologist on staff. And so they outsourced it to a non-public agency. And the young woman who was the licensed audiologist who administered the test, none of it made any sense. And she had transposed percentile rankings and standard scores on her scoring charts and whatnot. And I was like, I don’t think she understands what these numbers mean.

Rose Griffin
Hmm.

Anne Zachry
And her report made no sense. And so we asked for a second opinion at public expense, an IEE … for the district to fund an outside second opinion. And they said, “No.” And so we had to go to due process to argue over whether or not they had done a good job, and we needed a second opinion. And she gets on the witness stand, and we asked her, “Well, what’s the difference between a standard score and a percentile ranking?” And she was like, I don’t know. I’m not a statis-, statis-” (she couldn’t say “statistician”). She goes, “I’m not a statistics person.”

Rose Griffin
Hmm.

Anne Zachry
And I could just feel the attorney for the school district die inside right next to me …

Rose Griffin
Hmm.

Anne Zachry
…. because this was his case. You know, he was the one arguing that she knew what she was doing. He was a lawyer. He had no way of knowing that she didn’t know what those things were because he didn’t know what those things were.

Rose Griffin
Um-hmm.

Anne Zachry
So, he was just … she would say, “Well, of course I know what I’m doing!” So, he had her back. And, then we get in front of the judge and she just tanks! She couldn’t explain any of her data. And, then we had our own audiologist who came and testified who was an expert witness on how it should have been done, and, it was just night and day. And so, there are people out there who are going through the motions, who can administer and score a standardized assessment, but they don’t necessarily understand how to interpret the data. And they may not have even chosen the right test. In this particular case, she just used a boilerplate list of assessments that the owner of the company she worked for, who was also an audiologist, said, “This is what you do when you test for this.” And, so everybody was getting identical measures. None of it was individualized. And … I mean, for a large part, for that kind of testing, there’s only so many things you can do, but still. And so, she was just going through this list of tests that her boss had said, “This is what you do,” and listing the scores, but not explaining what any of it meant, and, in fact, she had her scores were all transposed and she had them jumbled up, and it didn’t mean anything. It made no sense whatsoever. And, so how can you trust that she even administered and scored them correctly? That does happen. For people who are thinking, “Oh, well standardized measures for pragmatic language …” If you know what you’re doing, you can go do an authentic language sample and the CASL, and that’s going to get you there. But, for people who are paint-by-numbers folks who really don’t understand, thinking they can do pragmatic language in a paint-by-numbers manner, you have to be able to engage in the act of pragmatic language of reading the person yourself in order to take the data necessary to read whether that person has intact pragmatic language skills. And, if you don’t know how to do that type of analysis, then you’re going to have … what I see is people falling more and more back on the standardized norm-referenced stuff and getting away from the observations … getting away from things like the double-interview, where they have to actually use judgment and there’s a professional level of skill that … and understanding and higher-level thinking and critical thinking skills that are required, that a paint-by-numbers, “Let’s just do a norm-referenced test and it will tell us what’s going on” … Up to a point, yes. But, that shouldn’t be the be-all and end-all. I think there’s a lot of value in some of these other, maybe standardized but not norm-referenced, maybe more criterion-referenced kinds of measures. One of the tools that I’ve seen used out here is called the Southern California Ordinal Scales of Development …

Rose Griffin
Hmm.

Anne Zachry
… and, it’s broken into a cognition, a communication, an adaptive behavior, a motor skills, and one other that I’m not remembering, but all these different aspects of development that you have these subtests in.

Rose Griffin
Um-hmm.

Anne Zachry
And, it’s based on a Piagetian model …

Rose Griffin
Hmm.

Anne Zachry
… where you’re trying to figure out what stage of Piagetian development the individual is in each of the different domains. Because, when you’re talking about someone with a developmental disability, in particular, there’s going to be scatter. That, they may be higher in cognition but lower in communication, if they have apraxia. They may be higher in cognition and communication, but lower in adaptive skills. It’s just, everybody’s different, right? And so, what it looks at, is it’s criterion-referenced, not norm-referenced, and you’re coming at, “Can this person do this thing in any kind of way, yes or no?” And, so, like, when you’re testing for whether they’ve mastered the concept of conservation, the idea that mass doesn’t change even if the way that the mass is arranged is different. So, like, if you have … or volume. So, if you pour water … a cup of water … you’re talking about, like, if you have a tall skinny beaker or a short fat beaker, and you pour a cup of water into each, and you ask the kid, “Which has more?” Well, neither, because it’s both a cup of water.

Rose Griffin
Hmm.

Anne Zachry
But, a kid who has not mastered conservation is gonna say the tall skinny one has more water because it goes up higher, and the short fat beaker has less because it’s shorter, relatively. And so, they’re only looking at it from one dimension. And someone who has mastered conservation knows it’s still the same amount of water. Or, you take a ball of clay and roll it out into a snake and you say, “Is it still the same amount of clay, or is it more or less?” And, a kid who hasn’t mastered conservation will say it’s more because it’s longer, but the kid who has will say, “It’s the same amount; I just changed the shape.” And so …

Rose Griffin
Hmm.

Anne Zachry
… when you’re doing things like that, sometimes what can happen is … when you’re talking about doing those kinds of things … sometimes, the example in the test … in the Ordinal Scales … will say, “Here are some ways you can test for this,” but it doesn’t obligate you to do it exactly that way, the way a norm-referenced test would … where you’ve got to administer and score it exactly the same way for everybody … well, the scoring is the same, but the administration is not the same on a criterion-referenced … because you’re trying to whether a kid has a skill or not, not how they display it. So, if you have to do something different, like if the ball of clay doesn’t work but the beakers of water gets you there, and they can still demonstrate they have at least, you know, emerging conservation skills. But, you only do one thing with the ball of clay and that’s where you leave it, and you don’t experiment with it, it’s like when you’re testing your hypotheses when you’re doing ABA. You’ve got to fool around with it to see if you’re actually … your hypothesis is right. So, for that kind of measure, what are the various different types of measures do you think are really the most reliable for giving you the broad, full picture of how someone … someone’s communication and behavior plays into each other?

Rose Griffin
Yeah, I think what’s most important is to … whatever you’re doing, it’s going to be dependent on your work setting. So if you’re in a public school, there might be a certain expectation of what type of evaluation tests you’re going to use versus being in a practice that is either private pay or is insurance led. Every work setting is going to have an expectation of what is going to be an assessment. But I think what’s most important with an assessment is to make sure that you talk to the student, you talk to the family, and that you observe the student in different settings. So observing the student in a classroom lesson; observing the student in a less structured environment, like gym or recess or lunch, to try to get a snapshot of the student’s skills. But I really think assessment is an ongoing process and that every time that you see a student, and you work with a student, you’re going to be assessing, “How is the student doing?”, “Are they generalizing their skills?”, and “How can I help support my students?

Anne Zachry
And that makes a lot of sense. I agree with you. I think … that’s music to my ears, because I think that that’s something that’s really important is the observation of students across various different settings, because you’re going to see different presentations …

Rose Griffin
Um-hmm.

Anne Zachry
… based on different environmental stimuli, and different social demands. So I think that that’s hugely important. I think that’s where a lot of the pragmatic stuff really comes out. I think that you coming at it from the perspective of both a BCBA and a speech and language pathologist … that your ability to see the function of the behavior and a moment where pragmatics are not working for someone has to be so much more informed and enlightened than, you know, different brains having to come together to piece together the same story. So I really, truly appreciate, you know, what you’re bringing to the table and your insights into this. This whole realm of how to, you know, help people who are struggling with these kinds of issues and all the different ways that can be done. And I’m excited to share your information with our audience as well so they can go to your site and your podcast and …

Rose Griffin
Ha, ha, ha! Well, it was really nice to connect. And yes, definitely feel free to reach out to me during the podcast, my free resources, and also the courses that I discussed today.

Anne Zachry
Absolutely! And I’ll be sure to include links to everything because a lot of my families are in, like, parents support groups and stuff they’ll benefit from it.

Rose Griffin
Yeah! That’s awesome! Yeah. so it was great to connect today. Thanks for having me on.

Anne Zachry
Thank you for listening to the podcast version of interview of Rose Griffin, SLP and BCBA. 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 are a parent, education professional or concerned taxpayer, and have questions or comments about special education-related matters, please email us at info@kps4parents.org or post a comment to our blog. That’s “info” at “K” as in “knowledge,” “P” as in “Powers,” “S” as in “Solutions,” the number “4,” “Parents,” (“p,” “a,” “r,” “e,” “n,” “t,” “s,”) dot, “o,” “r,” “g.” We hope you found our information useful and look forward to bringing more useful information to you. Subscribe to our feed to make sure that you receive the latest information from making special education actually work, an online publication of KPS4Parents. Find us online at KPS4Parents.org. KPS4Parents is a nonprofit lay advocacy organization. The information provided by KPS4Parents in Making Special Education Actually Work is based on the professional experiences and opinions of KPS4Parents’ lay advocates, and should not be construed as formal legal advice. If you require formal legal advice, please seek the counsel of a qualified attorney. All the content here is copyrighted by KPS4Parents, which reserves all rights.

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Is LAUSD Run by a Fascist Mafia?

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.

Example 1 – page 1

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 1 – page 2

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.

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

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Anne Zachry 00:00 Welcome to Making Special Education Actually Work, an online publication presented in blog and podcast form by KPS4Parents. As an added benefit to our subscribers and visitors to our site, we’re making podcast versions of our text only blog articles so that you can get the information you need on the go by downloading and listening at your convenience. We also occasionally conduct discussions with guest speakers via our podcast and transcribe the audio into text for our followers who prefer to read the content on our blog. Where the use of visual aids, legal citations, and references to other websites are used to better illustrate our points and help you understand the information, these tools appear in the text only portion of the blog post of which this podcast is a part. You will hear a distinctive sound [bell sound] during this podcast whenever references made to content that includes a link to another article, website, or download. Please refer back to the original blog article to access these resources. Today is April 28 2022. This post/podcast is titled, “Interview of Dawn Barclay, author of Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible and the Neurodiverse.” In this podcast, which was originally recorded on April 1 2022, Dawn and I discuss her book and the challenges that children with various special needs can experience when it comes to going places in the community, including travel and vacations.

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

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

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

Anne Zachry 03:32 True.

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

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

Dawn Barclay 04:06 Right.

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

Dawn Barclay 04:11 Right.

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

Dawn Barclay 04:20 Yes.

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

Dawn Barclay 04:34 Right.

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

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

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

Dawn Barclay 05:45 Yes.

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

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

Anne Zachry 06:13 Yeah.

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

Anne Zachry 06:15 Yep.

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

Anne Zachry 06:55 Right.

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

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

Dawn Barclay 07:48 Right.

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

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

Anne Zachry 08:27 Okay.

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

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

Dawn Barclay 09:31 Yes.

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

Dawn Barclay 10:21 Yes.

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

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

Anne Zachry 10:41 Yes, there are.

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

Anne Zachry 10:52 Exactly.

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

Anne Zachry 11:06 Oh, that’s so huge.

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

Anne Zachry 11:17 Yeah.

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

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

Dawn Barclay 11:33 Yes.

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

Dawn Barclay 11:55 Sure. Of course.

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

Dawn Barclay 11:56 That’s so true.

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

Dawn Barclay 12:53 Yeah.

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

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

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

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

Anne Zachry 14:14 Right, on.

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

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

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

Anne Zachry 15:17 Holy Moly!

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

Anne Zachry 15:31 Right.

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

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

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

Anne Zachry 16:50 No worries.

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

Anne Zachry 17:10 Right.

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

Anne Zachry 17:34 Right.

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

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

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

Anne Zachry 18:33 Right.

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

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

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

Anne Zachry 19:13 Yep.

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

Anne Zachry 19:29 Yeah.

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

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

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

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

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

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

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

Anne Zachry 21:39 Thank you.

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

Anne Zachry 22:35 Right.

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

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

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

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

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

Anne Zachry 24:51 Right on!

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

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

Dawn Barclay 25:08 Yes.

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

Dawn Barclay 25:17 Right.

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

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

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

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

Anne Zachry 26:03 You’re so welcome.

Anne Zachry 26:04 Thank you for listening to the podcast version of interview of Dawn Barclay, author of Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible and the Neurodiverse. KPS4Parents reminds its listeners that knowledge powers solutions for parents and all eligible children, regardless of disability, are entitled to a free and appropriate public education. If you’re a parent, education professional, or concerned taxpayer, and have questions or comments about special education related matters, please email us at info@kps4parents.org or post a comment to our blog that’s info at “K” as in “knowledge,” “p” as in “powers,” “S” as in “solutions,” the number “4,” “parents,” P-A-R-E-N-T-S dot O-R-G. We hope you found our information useful and look forward to bringing more useful information to you. Subscribe to our feed to make sure that you receive the latest information from Making Special Education Actually Work, an online publication of KPS4Parents. Find us online at KPS4Parents.org. KPS4Parents is a nonprofit lay advocacy organization. The information provided by KPS4Parents in Making Special Education Actually Work is based on the professional experiences and opinions of KPS4Parents’ lay advocates and should not be construed as formal legal advice. If you require formal legal advice, please seek the counsel of a qualified attorney. All the content here is copyrighted by KPS4Parents which reserves all rights.

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Interview of George Bailey, President of ZPods

https://zpodsforsleep.com

Transcript of Interview:

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

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

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

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

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

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

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

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

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

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

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

Anne Zachry 5:06
Right.

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

Anne Zachry 5:12
Right.

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

Anne Zachry 5:22
Right.

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

Anne Zachry 5:27
Um-hmm.

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

Anne Zachry 5:48
Right.

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

Anne Zachry 6:01
Right.

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

Anne Zachry 6:20
Right.

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

Anne Zachry 6:25
Exactly!

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

Anne Zachry 6:43
Right.

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

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

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

Anne Zachry 7:19
Right.

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

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

George Bailey 7:52
Yes!

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

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

Anne Zachry 9:30
Right.

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

Anne Zachry 9:48
Right.

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

George Bailey 9:53
Right.

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

Anne Zachry 10:05
Right.

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

Anne Zachry 10:09
Exactly!

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

Anne Zachry 10:28
Right.

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

Anne Zachry 10:52
Absolutely!

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

Anne Zachry 11:07
Right.

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

Anne Zachry 11:12
Hmmm.

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

Anne Zachry 11:24
Yep.

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

Anne Zachry 11:49
Right.

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

Anne Zachry 12:10
Yeah.

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

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

George Bailey 12:45
Yes, yes.

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

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

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

George Bailey 13:23
Yeah.

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

George Bailey 13:44
A situational analysis.

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

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

Anne Zachry 14:25
Right. Technical stuff.

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

Anne Zachry 14:40
Right.

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

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

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

Anne Zachry 15:49
Right.

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

Anne Zachry 16:03
Right.

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

Anne Zachry 16:32
Right.

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

Anne Zachry 16:50
Right.

George Bailey 16:50
Because it was that bad.

Anne Zachry 16:52
Yeah.

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

Anne Zachry 17:05
Right.

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

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

George Bailey 17:17
Yeah.

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

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

Anne Zachry 17:48
Right.

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

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

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

Anne Zachry 19:19
Right.

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

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

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

Anne Zachry 20:03
Right.

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

Anne Zachry 20:13
Right.

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

Anne Zachry 20:20
Um-hmm.

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

Anne Zachry 20:30
Right.

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

Anne Zachry 20:42
Right.

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

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

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

Anne Zachry 21:51
Right.

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

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

George Bailey 22:29
Yes, yes.

Anne Zachry 22:30
That’s curious.

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

Anne Zachry 22:37
Right.

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

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

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

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

George Bailey 23:01
Yeah.

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

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

Anne Zachry 24:42
Oh, right on.

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

Anne Zachry 24:51
Oh yeah.

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

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

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

Anne Zachry 25:16
Got it.

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

Anne Zachry 25:25
Ohhh!

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

Anne Zachry 25:46
Yeah.

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

Anne Zachry 26:36
Right.

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

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

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

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

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

Anne Zachry 27:15
Yeah, and …

George Bailey 27:15
… very much into this!

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

George Bailey 27:25
Yes!

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

George Bailey 28:34
Yes.

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

George Bailey 28:55
Oh wow, yeah!

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

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

Anne Zachry 30:07
Huge. Yeah.

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

Anne Zachry 30:22
Right.

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

Anne Zachry 30:35
Right.

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

Anne Zachry 30:48
Right.

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

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

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

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

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

Anne Zachry 32:20
Right.

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

Anne Zachry 32:24
Um-hmmm.

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

Anne Zachry 32:40
Yeah.

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

Anne Zachry 33:13
See in this … yeah?

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

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

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

Anne Zachry 36:43
Yep.

George Bailey 36:43
They work so hard.

Anne Zachry 36:45
Yep.

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

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

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

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

George Bailey 37:39
Yes, absolutely.

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

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

Anne Zachry 38:43
Right.

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

Anne Zachry 38:46
Right.

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

Anne Zachry 39:06
Yep.

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

Anne Zachry 39:19
Right.

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

Anne Zachry 39:32
Right.

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

Anne Zachry 39:37
Right.

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

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

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

Anne Zachry 40:08
Um-hmmm.

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

Anne Zachry 40:16
Right.

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

Anne Zachry 40:23
Absolutely.

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

Anne Zachry 41:00
Yeah.

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

Anne Zachry 41:11
Right.

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

Anne Zachry 41:21
Right.

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

Anne Zachry 41:28
Right.

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

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

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

Anne Zachry 43:56
Right.

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

Anne Zachry 44:08
Yep.

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

Anne Zachry 44:33
Yeah.

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

Anne Zachry 45:17
Right.

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

Anne Zachry 45:40
Right.

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

Anne Zachry 45:48
Yeah.

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

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

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

Anne Zachry 46:19
Right.

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

Anne Zachry 46:32
Right.

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

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

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

Anne Zachry 46:54
Right.

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

Anne Zachry 47:18
Right.

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

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

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

Anne Zachry 47:47
Right.

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

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

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

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

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

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

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

Anne Zachry 49:31
She is.

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

Anne Zachry 50:03
Right.

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

Anne Zachry 50:12
Right.

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

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

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

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

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

Anne Zachry 51:42
Good.

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

Anne Zachry 51:55
Wow.

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

Anne Zachry 52:01
That’s so cool.

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

Anne Zachry 52:14
Okay.

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

Anne Zachry 52:48
Right on.

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

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

George Bailey 54:48
Yeah.

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

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

Anne Zachry 56:52
Right.

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

Anne Zachry 57:11
Yeah.

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

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

George Bailey 57:36
Yes!

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

George Bailey 57:39
Very short sighted.

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

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

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

George Bailey 59:45
Absolutely. Thank you …

Anne Zachry 59:46
Thank you.

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

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

George Bailey 59:55
Thank you.

Anne Zachry 59:55
You’re so welcome.

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

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Pragmatic Language & YouTube Reaction Videos

Could YouTube reaction videos be used to teach pragmatic language skills?

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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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“Consequences” Doesn’t Mean “Punishment” in ABA

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34 CFR Sec. 300.320(a)(4)

Premack Principle

From Emotions to Advocacy

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Transcript:

Hi, it’s Anne with KPS4Parents. And I’m here again with one of our Quick-Fix videos, and today’s topic is consequences don’t mean punishment in ABA. And, what I want to focus on is a problem that I keep encountering in the field. And even though I’m able to successfully deal with it on a child-by-child basis, the systemic issue doesn’t seem to be going away. And so I think it’s something that all of us collectively need to be working on, just to make sure that the legal and scientific principles that apply are actually being applied in that our children are benefiting from the application of both.

And so I want to just get into this today. And hopefully, if you have any questions, of course, post comments, direct messaged us, send us an email, whatever, to ask your questions of us. And we’ll be happy to answer them to the degree that we can and refer you to other resources. But let’s go ahead and get into this.

So there’s two key considerations here that we really need to think about. And one of it is the legal side of it. The other side is the science side of it. And in terms of the legalities of it, it really I want to talk about what the law requires in terms of applying the science. And because that’s something that doesn’t get enough attention, I think in special education, but it’s at the heart of what the issues [are] that I encounter regularly.

So I know I brought up this particular piece of regulation in our other videos and in other posts and things we’ve done, but it’s because it’s so important. And it certainly is applicable here. And so I want to just recap it, and it’s Title 34, Code of the Federal Regulations, Section 300.320(a)(4). And specifically, what we want to look at, is this is the the part of the regulations that describe what’s supposed to go into an IEP. And, by no means is this everything that’s supposed to be going into an IEP. This is the part I want to focus on with respect to the issue I’m raising right now.

Basically, what this particular regulations requires, is that, in the IEP, you’ve got a statement of the services that the child is going to get; the specialized academic instruction, as well as the related services like speech and language, transportation, whatever. All of it has to be delivered according to the peer-reviewed research to the degree that is practicable.

And I don’t want to belabor the point of what “practicable” is supposed to mean, because honestly, there is no legal or professional standard. You can basically take the word to mean that you know that it can actually be done; you know that it’s achievable within the school setting. And so, when you’re talking about services that a child might need that are scientifically based, it’s specific to what’s going to give them equal access to education as that given to their peers who do not have disabilities, and so that’s what we’re focusing on here.

There has to be a scientific basis for the interventions being given. It has to be an evidence-based program. You just can’t have people in there making stuff up and saying, “Oh, yeah, this will work.” No! You need to be able to use stuff that has been proven to work, and is supported by evidence. That’s basically what 34 CFR, Sec. 300.320(a)(4) means; it’s that you’re applying the known science of what has been proven to work in order to teach children.

And that that shouldn’t be that complicated, but in this day and age of science denial and an abandonment of the rule of law, usually by the same individuals, it becomes a problem, especially if they’re employed within the education system. That’s why I keep, I think, running into this is because we definitely do have those folks who are deeply entrenched, and part of, you know, reforming public education is to get those people out of there.

So let’s talk about the applicable science, now that we know the law requires the science to be applied, and we actually know which law requires the science to be applied. Let’s talk about what the science actually is, when you’re talking about this terminology.

And so in this instance, we’re talking about Applied Behavioral Analysis now. ABA has become somewhat controversial in special education, because a lot of people don’t really understand what it is, least of all judges who try these cases.

And so let’s be clear on what ABA is. ABA is not a behavior program. ABA is not a intervention for children with autism. ABA is a science that applies to anything that behaves. That could be sea slugs; that could be computer programs; that could be your mother in law; t could be anything. It’s anything that behaves. You can use Applied Behavioral Analysis to figure out why a behavior has happened and the function that it serves. It renders behavior down to ones and zeros.

And so, the “one” is to get something and the “zero” is to get away from something or to escape something. And so, there’s only two sides to any behavior: acquire/attain or escape/avoid. That having been said, how do we figure out what’s happening, whether it’s an escape of behavior or an attainment behavior?

And so, one of the methods that’s commonly used in ABA is called ABC data collection. And this, in special education, is usually where I see things go immediately off the rails, when you’re talking about behavioral interventions for kids with special needs; that this ABC data collection is skewed because people are not properly using the terms as they’re meant to be used.

According to the peer reviewed research … according to the applicable science … everybody seems to get the “A” and the “B” of ABC, right, because there’s nothing that might contradict it or conflict with it. There’s not alternative definitions of these terms otherwise being bandied about in public education.

But when you get to the word “consequence,” in the public education setting, this is where people get really super confused. Because when you’re looking at the traditional punitive disciplinary model of how school districts have historically dealt with behaviors among students; it’s all very punishment-oriented. And so, a consequence is something that gets meted out by staff. It’s something that gets delivered by the personnel in response to the student’s behaviors. Like, “If you don’t do that, the consequence is going to be detention … or suspension … or you’re going to have to write 100 sentences … or there’s always some consequence delivered by some other person, and that’s a punishment.

That’s not what ABA is talking about at all. In an ABA, you have to remember, as a science, it’s using terms in a very neutral kind of way. And so, for example, “positive reinforcement” and “negative reinforcement” do not mean what most people think it means when you’re talking about ABA.

It’s like batteries; “positive” and “negative” don’t mean “good” and “bad,” when you’re talking about a battery. When you’re talking about the poles of the earth, you have a positive pole and a negative pole. That’s not good or bad; it’s just that they’re opposites of each other.

In ABA, when you’re talking about positive reinforcement, what you’re talking about is the presentation of something that’s going to encourage a behavior to happen, again; a reward of some kind for the behavior. And when you’re talking about negative reinforcement, you’re talking about taking away something unpleasant that increases the likelihood of a behavior happening.

So, for example, let’s say that you’re a child sitting in a classroom and there’s an alarm going off of some kind, and that alarm is very distressful to you. The moment that alarm gets turned off, that aversive stimuli is eliminated, and now the environment has become much more rewarding for you to be in, because that bad thing has gone away.

So negative reinforcement is taking away something you don’t want … a zero … escaping/avoidance. And, positive reinforcement is giving you something you do want … a reward of some kind … so, that’s the one. Again, either you’re getting something or you’re getting away from something; there’s the one or a zero.

And so bearing that in mind, “consequence” also does not mean what most people think it means in ABA. It’s not what other people do in response to the behavior. What other people choose to do in response to a behavior is called a “reactive strategy.” Now, whether it’s effective or not is a-whole-nother conversation, but someone else’s reaction is not automatically what the behavior seeks.

So, the consequence is what the individual is trying to make happen with that behavior; whatever it is that reinforces the behavior is the consequence they’re seeking.

So, for example, if you have a toddler climbing on the kitchen counter trying to get to the top of the refrigerator to the cookie jar, the function of that behavior is to acquire a cookie inside that cookie jar. And, they’re engaging in this dangerous behavior to get something that they want, without even realizing they could be risking their own safety, because they’re little and they don’t know any better. They’re just trying to get what they want; that’s all they’re thinking about.

So, the function of the behavior, the consequence that reinforces the behavior, is the acquisition of a cookie. “I’m going to climb among counter and I’m going to acquire a cookie. And that cookie is my reinforcement for having climbed on the counter.” Climbing on the counter is the behavior.

So, what triggered the behavior? What caused the child to say, “Hey, I could climb on this counter and get to this cookie jar and get a cookie out of it, if I really wanted to”? Well, usually, it’s being able to see the cookie jar; knowing that it’s up there. And so, the antecedent is witnessing the presence of the cookie jar, or proximity to the cookie jar, or observation of the cookie jar. It’s something that exists in the environment that when they see it, they’re like, “Oh! I want a cookie,” and then that behavior of counter-climbing starts. And if they get a cookie, that’s the consequence they were seeking that reinforces the behavior.

So, in ABA, “consequence” means the payoff that the behavior is intended to make happen, whether it’s escape/avoidance, or its acquisition/attainment.

And so, when you’re looking at a behavior intervention plan in an IEP, and they’re talking about, “What are the consequences of this behavior?” and it starts listing all the things that the personnel on the school do in response to that behavior, that’s not right. That’s not what “consequence” means in that context. That’s not the application of the science.

What they’re describing are the reactive strategies. “This is what we do when we see this behavior.”

Now, ideally, when you’re doing a behavioral intervention, the consequence the person is trying to engage in … the student … is not being delivered. It’s being met with a reactive strategy, instead, to redirect them to something else … to have them use a more appropriate behavior, like asking for a cookie instead of climbing on the counter.

You’re trying to replace that behavior. You try to teach a replacement behavior so that the need is fulfilled, or whatever that function is that they’re trying to meet, they’re using a more appropriate behavior to make that happen than the one that you’re trying to mitigate, if they’re, especially if they’re engaging in something that’s dangerous, or, you know, ii could compromise their safety. You want to teach them an appropriate replacement behavior.

Or, if they’re being disruptive in the classroom, because they’re getting up and running around. And, maybe what they really need to do is request a sensory break; they hold up a little break card, and they tiptoe over to the sensory area, or the sensory room, or they have some kind of, you know, fidget at their desk or something, that they can get their wiggles out without running around the room and disrupting everybody else.

First of all, you just want to make sure the consequence they’re seeking isn’t delivered. Because if the reinforcement they’re seeking is not forthcoming, then that behavior is not going to work for them anymore, and they’re gonna have to replace it with something else. But if you don’t teach them what to do, instead, whatever they come up with, and stuff, on their own, instead of what was is no longer working for them, if all you do is withhold reinforcement, there’s a really good chance, they’re going to find some other maladaptive behavior to replace the one you were trying to get rid of in order to still gain that outcome. And so you need to teach them a replacement behavior that’s more socially acceptable in that setting, to meet whatever want or need it is that they’re trying to … you know, to address.

And if, for some reason, the behavior is seeking something that’s inappropriate during that time, then it’s about teaching them how to delay gratification and wait until later, and they can work towards it. They can earn it, like, if what they really want is to play a game on their iPad, then that’s something they have to earn by doing something you want them to do. And then you use what’s called a Premack Principle, which is a first-then strategy where, “first you do this, and then you can have what you want.”

And so, you get them to wait until later to acquire that reinforcer that they’re seeking and the only way they can actually obtain it is by doing what you want them to do, rather than running around, you know. You don’t want them acting up in the classroom, what you want them to do is to engage in this replacement behavior and earn whatever it is they’re looking for that they find reinforcing. If it’s something like, you know, a tangible, like a food item, or a toy, or a game, or if they need a break, if their sensory system is overwhelmed, and they truly need a break, you want them to ask for it appropriately and not just get up and run around the room.

And so, it’s about teaching them skills to still see their needs met. It’s not about leaving them hanging and say, “You know that behavior is inappropriate. I don’t care why it’s happening. Whatever your needs are that you’re trying to address, just stop it.”

Well, how would you like it if somebody told you to stop meeting your needs? And why would you do that to a child and who’s doing the best they can with what they have to work with, especially if they’re disabled, and they’re struggling even harder to figure out what the right thing to do is? That’s why you’re there. You’re there to teach them that.

This is how “consequence” gets misused in the special education context, when you’re talking about assessing behaviors, because you can’t figure out the function of the behavior unless you understand what is trying to make happen. What is the outcome the individual is trying to achieve by acting that way? That’s going to tell you what the replacement behavior should be. So if a behavior … if a child is rolling around on the floor holding his stomach because he’s in stomach pain, then the replacement behavior is a verbal request of some kind, or some kind of request that’s not rolling around the floor and screaming and yelling, and asking to go to the nurse’s office.

But, if they’re rolling around on the floor, because they just don’t want to do the work, well, how you react to that is going to be very different from the kid who really does have a stomach problem and needs to go to the nurse’s office. And so, it depends on what they’re trying to make happen. If they’re calling attention to the fact that they’re in pain, that’s quite a different thing than if they’re just throwing a fit because they don’t want to do the work. And so your reactive strategies are going to vary depending on the function of the behavior.

And you can’t determine the function of the behavior until you ascertain the consequence they’re trying to achieve by engaging in it in the first place. What you’ll find are individuals in the public education system who are used to using the term “consequences” to talk about what they’re going to do to you if you don’t act right. That is a punishment model; it’s very punitive; it’s very authoritarian. And it’s not about teaching anybody anything. It’s just about throwing your weight around and showing them who’s boss, which, you know, do we really need one more asshole in the public schools?

That’s not how that’s supposed to be used. And if anybody’s doing that, then it’s highly inappropriate and it does not conform with the science and, therefore, does not conform with the law. So explaining those distinctions, I think, is really important here. “Consequence” does not mean “reactive strategy.” It’s not what you do as a staff person in response to the behavior; it’s the outcome the individual is trying to achieve.

So based on that, I mean, have you seen this in your child’s IEP, if your child has a behavior intervention plan, or has had one in the past? Does this sound familiar at all to you?

So let’s look at an example, because I think that that actually can be really helpful.

Okay, so here’s what I want you to look at. In this document at the very, very top, it says, “[Student] is [sic] very compliant and pleasant young man. [Student] is not currently displaying behaviors that are interfering with others [sic] learning.” So here we are with this behavior plan and, first of all that, you know, when we’re talking about an operational definition, why would you have a positive behavior intervention plan for a student who is not currently displaying behaviors that are interfering with others learning? That’s not the point.

The point of any behavior intervention plan is to address behaviors that interfere with anybody’s learning, and here the student’s behaviors are being off task and not engaging in the instruction. How that doesn’t interfere with learning is beyond me. And, while it’s true that other people’s learning may not have been disrupted by him staring off into space, that doesn’t mean that it wasn’t because that can be distracting when you got a neighbor who’s, you know, rubbernecking as he’s sitting right next to you, and you’re trying to focus. But, more to the point, it was his learning that was being disrupted. And that was the whole point of all of this.

So here we have, you know, some really vague descriptions of what exactly is going on with him and how it affects him. And the reality is his behaviors didn’t disrupt other people because he has a 1:1 aide who’s sitting in there making sure they don’t. And so again, they’re trying to treat the reactive strategies … the ameliorating effects of the mitigating strategies they’re using to somehow negate the fact that he has behavior challenges. He does have behaviors; that’s why he has an aide. What is this person doing with him that makes learning accessible to him, and prevents him from being disruptive to other people? And this document didn’t capture that.

The thing to notice here, too, is that there’s nothing listed with respect to consequences. The box there says, “Describe: Include antecedent/consequences as appropriate.” We have some information that describes when the behavior happens, or the conditions that sort of gives us a clue as to antecedents, but there’s nothing here listed with respect to consequences. And we had to fight tooth and nail to get the district’s BCBA to apply Applied Behavioral Analysis, and, even still, this was’t it. This was just a terrible document.

And so what you see here is not just the document itself, but also our feedback on behalf of the parent as to what it was going to take to fix it and make it right. We ultimately did get that resolved, but when you are being given IEP content as a parent, and they’re requesting your signature to authorize it, and, you know, you’re supposed to be signing off on this as somehow was beneficial to your child, and you consent to it, if what they’re giving you isn’t even sensible, it doesn’t make a lick of sense, and it’s not scientific, you shouldn’t be agreeing to it.

And, in California, which is one of a number of consent states where parent parental consent is required to even so much has change an IEP, much less, you know, authorize it for implementation, this is something where a parent can come back and say, like, “I’m not going to agree to this. This doesn’t even make any sense. Here’s what’s wrong with it, and here’s what you need to do to fix it.”

And so, this goes just to the point that you can’t automatically trust that the documents being prepared say what they need to say, even if the people who are preparing them have all these fancy degrees and credentials that supposedly make them experts. Again, this piece of garbage was written by someone with a BCBA. This person was board certified to apply the science of Applied Behavioral Analysis to the design and delivery of IEPs for special education students in conformity with 34 CFR Section 300.320(a)(4), and this is the crap we got.

Knowing that, you can’t just automatically go in and trust that these people are going to give you expert advice or guidance, or conform with the science that their expertise supposedly makes them experts in. You have to be very critical as a parent, that, you know, if you’re going to … if they’re going to do this, they need to be doing it in conformity with the law, which requires them to do it in conformity with the science. And so it’s as simple as that.

And yet, if you as a parent don’t know what the science is, much less what the laws are … and you’re the one responsible for enforcing the law, unfortunately, because that’s the way the law is written … it becomes your burden as a parent to learn these things so you can protect your child, as unfair as that is. This is a circumstance we currently find ourselves in and until the IDEA gets reauthorized in a way that makes parents not the only entity responsible for enforcement, this is the boat we’re in.

So, it’s not enough that they use the right form. That may be procedurally compliant, up to a point, ut it’s not substantively compliant because it doesn’t give the child what the child actually needs. As a parent, just because you see things coming across on official forms and letterhead, don’t automatically assume that they say what they need to say. That … you need to be able to go in and actually dig into the document … the language of the document … and make sure that it actually gives your child what it’s supposed to.

And so hopefully, that helps you understand this issue and what “consequence” means in terms of Applied Behavioral Analysis versus a disciplinary model of behavioral intervention. As you’re pushing for your child to get appropriate interventions in school through the IEP process, you make sure that you’re using the right language and you’re asking for the right things. And, you know, when somebody is blowing smoke, and you’re able to call them on it … in, of course, as dignified and respectful way as possible. But, you know, you’re not obligated to take a bunch of guff off of these people either.

So, hopefully that’s been helpful and we look forward to seeing you in our next Quick-Fix video. If this was helpful, please like, share … if you haven’t already, subscribe to our videos here on YouTube. And, if you want to be able to access this video after it expires off of YouTube, it will live on forever ad-free on our Patreon channel, which I’ll have links to everything below. So again, thanks so much for watching, and we look forward to seeing you again in a future video.