Legitimate Parent Advocacy vs. Conspiratorial Movements

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.

Technology and the Intersectionality of Larry P.

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.

OCR Complaint Results in District-wide Compensatory Education

Click here for full text

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.

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.

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

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

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

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

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

Anne Zachry 03:32 True.

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

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

Dawn Barclay 04:06 Right.

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

Dawn Barclay 04:11 Right.

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

Dawn Barclay 04:20 Yes.

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

Dawn Barclay 04:34 Right.

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

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

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

Dawn Barclay 05:45 Yes.

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

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

Anne Zachry 06:13 Yeah.

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

Anne Zachry 06:15 Yep.

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

Anne Zachry 06:55 Right.

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

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

Dawn Barclay 07:48 Right.

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

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

Anne Zachry 08:27 Okay.

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

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

Dawn Barclay 09:31 Yes.

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

Dawn Barclay 10:21 Yes.

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

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

Anne Zachry 10:41 Yes, there are.

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

Anne Zachry 10:52 Exactly.

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

Anne Zachry 11:06 Oh, that’s so huge.

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

Anne Zachry 11:17 Yeah.

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

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

Dawn Barclay 11:33 Yes.

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

Dawn Barclay 11:55 Sure. Of course.

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

Dawn Barclay 11:56 That’s so true.

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

Dawn Barclay 12:53 Yeah.

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

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

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

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

Anne Zachry 14:14 Right, on.

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

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

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

Anne Zachry 15:17 Holy Moly!

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

Anne Zachry 15:31 Right.

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

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

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

Anne Zachry 16:50 No worries.

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

Anne Zachry 17:10 Right.

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

Anne Zachry 17:34 Right.

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

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

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

Anne Zachry 18:33 Right.

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

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

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

Anne Zachry 19:13 Yep.

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

Anne Zachry 19:29 Yeah.

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

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

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

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

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

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

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

Anne Zachry 21:39 Thank you.

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

Anne Zachry 22:35 Right.

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

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

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

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

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

Anne Zachry 24:51 Right on!

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

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

Dawn Barclay 25:08 Yes.

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

Dawn Barclay 25:17 Right.

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

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

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

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

Anne Zachry 26:03 You’re so welcome.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Getting Help with Post-Shutdown IEPs

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

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

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

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

Copyright 2021, KPS4Parents

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

Photo credit: Marco Verch

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Using ABA Principles to Navigate the IEP Process

Photo credit: Joe Loong

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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