Fixing Special Ed, Part 7:Autism, dyslexia, societal changes reveal a broken special-ed system
Once upon a time — say, back in 1975 — the federal Individuals with Disabilities Education Act (IDEA) was, at least on paper, the very model of customized, personalized education.
Not only did it promise individualized public education for millions of children who until then had been barred from public schools, but it also appeared to give parents an explicit, legal voice in that education.
Nevertheless, today more and more parents of special-needs children are turning away from their local school district’s implementation of IDEA as they seek better solutions to their children’s learning needs.
Why is that?
Generally, it’s because millions of parents by now have had their own personal experiences with this too-frequently dysfunctional system, or, more fortunately, had already learned of others’ experiences. And this knowledge, in turn, has fueled the broad rise of an active desire — indeed, a market demand — for something different and more effective.
Families with children on the autism spectrum have been at the forefront of this wave. Although numbers of Autism Spectrum Disorder diagnoses remain small as a percentage of all special-ed diagnoses, they nevertheless, since the turn of the century, have been mushrooming.
But now a much broader group of families are following a similar course. These are the parents of dyslexic children.
Both the extent of the departure from special-ed and the reasons for it are well covered in a recent book, How Autism is Reshaping Special Education: The Unbundling of IDEA by Mark K. Claypool and John M. McLaughlin.
A major factor behind the growing divorce, begin the authors, is unbundling — the broad shift in expectations and preferences occurring across Western society: Instead of collective, one-size-fits-all, mass-market goods, people are opting increasing for newly available personalized products and services.
“Who needs 150 channels when 99 percent of viewing is done on a handful of stations,” ask Claypool and McLaughlin:
Streaming services like Hulu, Amazon Prime and Netflix provide viewers what they want when they want it… Music consumers no longer buy an album or a CD but rather purchase a single song… Independent and customized have become a way of life, characteristics that more and more people value.
One can buy or sell anything on eBay, hail a ride via Uber, book a room for the night at Airbnb, or arrange a vacation house for a month in Costa Rica with VRBO. These developments create countless challenges for traditional stores, taxis, and hotels and countless headaches for government entities desiring to collect taxes and regulate.
As such expectations of personalized and customized treatment have become common, parents, naturally enough, have increasingly recognized the gap between IDEA’s promises of “individualized” education and the actual one-size-fits-all IEPs that school districts actually tend to produce.
“While there are 6.5 million IEPs in place,” note Claypool and McLaughlin, “they are not handcrafted or artisan made. A vast majority of the programs within a district hardly vary one from another,” and instead are regularly composed of the ingredients already available locally.
Thus, when school districts insist that the “appropriate” placement for a child with autism’s intense needs is not with a board-certified behavior analyst — that is, someone trained in the approach with by far the best track record bringing autistic kids into the mainstream — but in a group with developmentally delayed and dyslexic kids, well-informed parents bridle.
Yet that is what school districts frequently seek to do. IDEA, which was “once the mother of customization,” write Claypool and McLaughlin, “is now mired by regulations, oblivious to outcomes, and hardly the innovative force it once was in its early days.”
The inherent contradiction between control-oriented government and the human desire for choice has once again surfaced. All over the U.S., regulatory education bureaucracies reverted to type and quietly began discounting the needs of their ostensible clients while elevating the priority of bureaucratic process.
IDEA was, after all, a law. And despite all the good intentions, write the authors, “the law still had to be administered.” Thus, “a bureaucracy was created that focused more on process than outcome, lost sight of its original intent, and failed to keep up with the research.
“After 40 years of regulation upon regulation and calculated noncompliance on the part of school districts, this parentally enforced federal law is ripe for unbundling.”
Phyllis Wolfram, executive director of special programs for Springfield, Mo. public schools, agrees: “When you read the [IDEA] statute in and of itself, it’s not bad. It’s when you get to the regulations that you see it is out of control.”
“What we have structured in federal law,” says Greg Boris, leadership-development and policy specialist at the University of South Dakota Center for Disabilities:
…does not account for changes in pedagogy or changes in medical knowledge or changes in human knowledge on how to address any one of the 13 disability categories. It says, ‘Here are the categories, and you get your multidisciplinary team, you do the assessment, you identify the present levels of performance, you note strengths and weaknesses, you write IEPs, et cetera.’ It doesn’t allow for changes. It’s what we’re stuck with.
Changes, however, are what parents want — and what legislators had implicitly been promising them for their children. But the actual IDEA legislation had been written primarily to address and accomplish a short-term goal — the access of all children to a public education. The difficult, complex, thorny problems of how to achieve actual benefit were sidestepped.
Setting neither academic, social, or behavioral expectations, IDEA instead, in practice, left actual outcomes for children to be thrashed out in the courts through legal warfare between parents and school districts.
Miriam Kurtzig Freedman, a Boston special-ed attorney who represents school districts, says IDEA was “premised on corrosive distrust rather than pedagogy, created a complicated system of federal, state, and local requirements, and has spawned a host of unintended consequences, full of dilemmas for educators, parents, and citizens.”
Consequently, parents have increasingly come to see special-education’s primary focus as one of simply keeping the programs running, keeping the salaries coming in, and pretending that all is — if not actually good — at least better than nothing.
Thus, recognizing the IDEA paradigm’s diminishing efficacy and relevance, many of those parents went out looking for better solutions on their own — some of which they found.
Applied Behavioral Analysis
Most active on this front has been the autism community, which discovered solutions in the behavioral sciences and neurosciences.
Activist parent Marcella Ridley, in the forward to the Claypool-McLaughlin book, recounts her personal experience.
She and her husband had been told by a developmental pediatrician “that our son would most likely never be a contributing member of society and to expect institutionalization by age 13.”
It was “several weeks and buckets of midnight tears later, [that] with the help of family and friends, I got my wits about me and found Ann Eldridge and Early Autism Project in Sumter, South Carolina.”
Eldridge, says Ridley, “trained our therapists and developed a plan of attack,” whereupon:
Within the first two weeks of applied behavior analysis, my child, who had never uttered anything but a blood-curdling scream, was signing for “milk,” “more,” “swing,” and, of course, “cookie.”
The number of 8-year-olds with autism between 2002 and 2010 rose from one in 150 to one in 68. Those exploding numbers, fueling the quickly growing profession of applied behavior analysis, have revealed serious structural incapacities within public education’s ability to adapt.
“The wheels hopefully won’t come off of public education,” observes Professor Douglas Fuchs at Vanderbilt University’s Peabody College, “but the wheels are beginning to wobble, because more and more people see the schools as incapable of providing the kind of intervention that their children need.
“Board Certified Behavior Analysts represent an effort to jack up the intensity of services that many, many kids — we’re talking hundreds of thousands, if not millions — with a variety of labels requiring intensive instruction are not getting, period.”
Fuchs is also the Nicholas Hobbs Chair in Special Education and Human Development at Peabody.
He notes that, “Twenty and 30 years ago or 30 and 40 years ago, special education saw itself as the provider of intensive instruction…
“For all kinds of reasons, including an inclusion movement that, in my view, took an unfortunate turn — meaning that inclusion turned into a kind of orthodox full inclusion — and for lots of other reasons, schools no longer can provide intensive instruction.”
Autism parents and organizations such as Autism Speaks have been the initial disruptors of the special-ed status quo. Yet, following closely behind them is the much larger dyslexia community.
Ben Shifrin is headmaster of the Jemicy School in Owings Mills, Maryland, which educates students with dyslexia and related language-based learning differences. He also serves on the Board of the International Dyslexia Association as its vice president.
“I believe dyslexia organizations are following the Autism Speaks model,” says Shifrin. “What this will do is allow students who have been denied services to get the services they need.
“At present, having a diagnosis of dyslexia does not even secure Section 504 [of the first disability civil rights law, the 1973 Rehabilitation Act] services. School districts refuse to recognize it for whatever reason.”
Shifrin acknowledges that many state lawmakers “are afraid of the money implications of dyslexia legislation,” but says he doesn’t believe such legislation would actually raise costs. “In fact, if we utilize our reading instruction money more effectively, we can take care of the dyslexia population,” he argues.
The primary group seeking dyslexia legislation is Decoding Dyslexia — a grassroots parents’ movement. Like Autism Speaks, it harnesses frustration with public education and seeks direct state and federal legislative relief.
“If Autism Speaks is the tip of the iceberg,” write Claypool and McLaughlin, “then Decoding Dyslexia and the International Dyslexia Association, the Learning Disabilities Association of America, and a myriad of other organizations are waiting just below the surface to rip a jagged hole in a special education process and a federal law that places procedures over people and is unequipped to keep up with the speed of research in neurosciences and the attendant benefits for students with autism and other disabilities.”
Special-education attorney Sonja Kerr agrees that the parents of children with dyslexia are not that far behind.
“I went to an International Dyslexia Association conference a few years ago,” she said, where the “most common statement from parents of kids with dyslexia was much more frightening than the questions about ABA and kids with autism.
“The question from dyslexia parents was, ‘Why should I even put my kid in special education? My kid has been in special education — or my neighbor’s kid has been in special education — for five years and still can’t read.’ That is much scarier because of the volume, because the number of kids with dyslexia makes the autism group look tiny in comparison.”
Thus, argues Kerr, government-run special education may well be on its last legs.
“If two of the largest groups … are saying that your programs are not working, and they are not just rejecting them in favor of nothing, but rejecting them in favor of something that does work, whether it’s Orton-Gillingham tutoring or private school or autism ABA programming, you have a broken system. That speaks volumes.”
Autism Speaks, says Kerr, “is simply the first group. But I think that Decoding Dyslexia families are right next to them, and other groups are not that far behind. They’re all saying the same thing. ‘Wait a minute. I went to this school, they told me they would help my kid, they told me they would provide my kid with something that would work, and they’re not delivering.’”
Special-education settlements are already “costing school districts a fortune,” Kerr points out, because school districts “are not looking at the reality of programs that work for children.
“Unless a district has students with autism in well-validated, scientifically proven, peer-reviewed research programs that produce results, the districts are going to lose those cases” when parents take them to court. Wise districts, she says, are hiring people who are truly trained in ABA and who know how to provide ABA in sufficient numbers, how to actually provide programs.”
“The foolish districts,” on the other hand, says Kerr, “are trying to buck it and say, ‘You know, we can provide less than that. See you in court.’”
However, once the school districts find themselves in court, they increasingly find themselves before knowledgeable — and frustrated — hearing officers.
Citing a case she’d presented about 18 months earlier, Kerr reported “the hearing officer totally hammered the district on a young man with dyslexia and said, “This kid needs Orton-Gillingham immediately.”
Kerr observed that, “Hearing officers are hearing over and over and over again experts coming in and saying, ‘You can teach kids with Asperger’s. You can teach kids with dyslexia. You can teach kids with emotional disturbance. It’s doable, and here’s how you do it. And here is the research behind it, and it is validated.’
“After hearing that over and over and over, the officers become dubious of a district’s claims that, ‘well, we tried a little bit of this, tried a little bit of that.’ What the school districts offer just doesn’t stack up against what the research recommends.”
Attorney Kerr expects the autism parents and the dyslexia parents to soon be joined by groups “with really high numbers of kids, like kids with mental health issues.”
When that happens, she says, “You are going to see a parent-led revolution saying special education is broken.”
Suppose that, as Kerr and others suggest, the current public-school-district model for the delivery of special-ed services is, indeed, on its last legs.
Have any of the states found ways to address the main problems that regularly show up in IEP implementation?
The answer is yes, and Part Eight of this series will explore that subject.
Earlier in the series:
Part 1: Supremes’ decision on special-ed sets higher standards for care
Called ‘a recipe for financial disaster’ by unhappy
Part 2: New, higher special-ed costs looming for State of Nevada
9th Circuit signals lack of patience with ploys
school districts have used to suppress costs
Part 3: School systems have circumvented federal special-ed law for decades
Los Angeles, Texas, New York exemplify noncompliance styles
Part 4: CCSD asked for special-ed audit then attempted to hide results
Revealed: Records tampering, state and
federal law violations, illegal IEP changes
Part 5: 2001: CCSD, State of Nevada lose precedent-setting Amanda J. case
Apparent shift in district’s strategy follows: Fight until jury trial looms, then settle with parents
Part 6: Special-ed has a fundamental problem: government rigidity blocks innovation
Leaves school administrators stuck within
a system-corrupting dilemma: kids vs cost
Steven Miller is managing editor of Nevada Journal and senior vice president at the Nevada Policy Research Institute.