Humor me. Please do what I suggest when I suggest it. I know some of you could skip some of these steps. But don't. I want you to do them, and I want to see them. Once again, what I'm giving you is a model. This is not YOUR topic. It's MY topic. Your topic will be one you choose.

I want to write something about the impact of severe learning disabilities, the cost of remediating them, and/or the responsibility for footing the bill. Some questions:

1. Are most or all learning disabilities actually neurological disorders? If so, do most health insurers assume any responsibility for expensive treatments? How much do they reimburse? For what? Why? Does the rationale for these reimbursement strategies make sense? Are they cost-effective in the long run? Are they humane and morally responsible?
2. If learning disabilities are "not medical" but rather "educational" issues, what does that mean? If someone's brain isn't working right, why do some people think that's not a medical issue? What do we mean by a "purely educational" issue?
3. Has anyone done any statistical estimates of how many children have severe learning disabilities, and how many of these kids receive treatment? How many receive minimal treatment? How many receive optimal treatment? How many receive no treatment? In each case, why?
4. What are the "severe" learning disabilities, and how do they differ from temporary problems that any kid might have, like minor difficulties learning to read?
5. How are local schools dealing with these kids? In Virginia? In Maryland? In D.C.? What's the norm around the U.S.? Is there a national policy about what public schools should provide for seriously disabled students? If so, for which students? Who gets left out? Why? If there is no federal policy, why is there no federal policy?
6. How often are parents stuck with huge bills no one else will pay? What's the impact on affected families?
7. What's the outlook for disabled kids who don't get help?
8. What's the outlook for disabled kids who get some help, but not enough? How much is enough? Who decides how much is enough?
9. What should public schools use as a measure of how successful their special education is? For example, some states set the goal of helping kids "achieve their true potential," whereas other states only set the goal of helping kids "function normally," which clearly is a lower standard. Which standard is more appropriate, and why? And in the case of the first standard, how do you judge the "true potential" of someone who has never shown what that is?
10. Currently school policy, in all public and most private schools, is to "maximize mainstreaming." This means that disabled children are exposed to and educated with "normal" kids for as much of the school day as possible. Is this really good for them? And is it good for the "normal" kids? Why or why not?

I'm the mother of an eight-year-old boy with unspecified learning disabilities that have, over the years, been given various diagnostic labels. He was first diagnosed as "developmentally delayed" at 2 1/2. Our HMO paid for $500 worth of private psychological testing (done at Georgetown University) in addition to similar testing later done by the public schools. We were eventually told he had something called "semantic-pragmatic language processing disorder," an inability to process language properly. We were also told he might have difficulty controlling the fine motor muscles of his hands.

The cause of the language disability--which was the most important issue--was either delayed or distorted auditory processing, on the one hand, or poor sensory integration on the other. Both of these problems are caused by a failure of the neurons of the brain to secrete the right amounts and kinds of neurochemicals. The immediate result is a brain that's physically unable to process information in the typical way or at the typical speed. The end result is an immature child who fails to develop mentally in the right way or at the right speed. He doesn't listen or respond well to directions, and sometimes appears to be deaf, though tests show he has normal hearing. He's also often clumsy and very late in learning physical tasks like drinking from a cup, eating from a spoon, or dressing.

Fairfax County found Sam eligible for preschool special education, which he received. However, by the time he was 4 1/2, the County informed us that he was no longer "disabled enough" to qualify for assistance.

During this time, we had also augmented the County's special education program with private speech therapy and a private language arts preschool for language-delayed children. We paid for more than 90 % of the private assistance ourselves. We knew other families receiving help from their insurers or HMOs, but our HMO said we were only eligible for very limited forms of assistance from them. How limited? Well, then as was often later the case, they would pay for diagnostic tests and consultations, but then refuse to pay for the further tests or treatment recommended in the consultation. Essentially this meant that they were wasting money by allowing the consultation. After all, there's no point in diagnosing someone's cancer and then telling him you won't pay for surgery, radiation, or chemotherapy.

When our HMO did pay for some treatment, it was always substantially less than what the consultant recommended. For example, Georgetown University suggested that Sam would need extensive speech therapy at least up till kindergarten. That would be at least two full years of speech therapy, or in other words, 104 weeks of speech therapy. Kaiser agreed to pay for 15 weeks of speech therapy.

Sam had improved to the point where he could attend kindergarten at the expected age, 5, in a small private school with small class sizes. But he continued to have extreme difficulty listening and following directions. Sam's school wanted a clearer diagnosis of his problem. So did we.

Sam's teachers and pediatrician believed that a diagnostic label was only important because it might suggest what medications could help him. In fact, we were basically told that we should just start trying medications, figure out what worked, and then assume a diagnosis on the basis of what medicine helped. Our HMO agreed to a $500 consultation with a pediatric neurologist who was supposed to tell us what medication to try first. But he declined to diagnose or prescribe, saying that Sam needed $1500 of further testing by a psycho-educational tester. Kaiser refused to pay for this further testing, even though their own pediatric neurologist said he couldn't diagnose Sam without it. So we had no choice but to pay for it ourselves.

The psycho-educational tester told us that we weren't gettng enough help from either the public schools or our HMO. What he said about the public schools was particularly disturbing to us. He told us that our son was much brighter than the public schools claimed he was. He also said that we should avoid public schools for our son for as long as we could possibly afford to do so. Our son, he said, was a type of child they rarely served well, largely because Sam's combination of abilities and disabilities didn't fit their classification system, meaning he would often be denied help he really needed.

The tester then recommended the medication we'd anticipated he would, the most commonly prescribed learning stimulant, Ritalin. He said that we should start with a hypothesis of simple ADHD. (This is "attention deficit/hyperactivity disorder," a catch-all phrase that essentially means "we don't know what's wrong but he can't focus his attention".) Ritalin is usually prescribed for this condition.

Our son improved dramatically on Ritalin, but he also developed strange side effects, such as odd ritual gestures and compulsions, rashes, and nightmares. He was switched to an alternative stimulant called "Adderall." A wide array of professional consultants then began the quest for an additional drug to elevate his mood and reduce his compulsions.

Meanwhile, our son has developed a phobia about taking medications--any medications. Getting him to take a small fragment of a 10 mg. pill regularly takes 20 minutes and is an ordeal punctuated by screams and sobs. (It has been known to take over an hour on a bad day.) No one has been able to help us with this problem. Plenty of people have tried to help us, and they have all charged anywhere from $70 an hour to $130 an hour to do so. One clinical psychologist we saw for over a year took thousands of dollars from us and did little more than lecture me on how if I were a better mother, surely I would be able to do this. (This is my perspective, which may not be objective, but I do know that we spent a lot of money and got no real help whatsoever.) Several hundred more dollars spent on an "educational consultant" netted us the opinion that she couldn't think of anything to do differently from what we were already doing.

We continued to believe that a real diagnosis of our son's problems had eluded us, and our counselor agreed. In December 1999 my son finally was approved for an EEG, which our HMO paid for. The results were "somewhat abnormal". Yet our HMO refused to fund an interpretation of the results by a pediatric neurologist, despite a family history of more severe neurological disorders, including epilepsy. When we went to the pediatric neurologist on our own, he sent us to a child psychiatrist. This psychiatrist gave us the label "Tourette's Syndrome", which she thought might explain the EEG results and some of Sam's anxious and obsessive behaviors. But this label has not helped us find another medication to alleviate his symptoms, at least not yet. At this point, we're extremely frustrated by the fragmentary and irrational kind of help our HMO has offered us. How many more people will we have to go to, and how much will we have to pay for ourselves?

The public schools have also helped us in fragmentary and irrational ways. As I said, they found Sam eligible for special education in preschool. But they told us that their funding guidelines required them to cut off aid to him in kindergarten because he wasn't "disabled enough" to be eligible for it. Yet they also told us that he would have difficulty learning to read and write, that they already knew this, and that we should come back in second grade. By that time, they said, his skills would probably have deteriorated to a level where they'd be allowed to offer him special education again (?!). Nearly all specialists agree that the later you wait to offer a child help, the more help you'll wind up having to give him. We pointed this out. They said they knew this, but whoever had put together their funding guidelines evidently did not.

Here's where we are today:

1. We can't rely on the public schools to educate our child. So we must pay for private education, at least for the foreseeable future. This is costing us about eight K a year, and we're told that as private schools go, ours is a bargain. In the future we may consider public schools. Eventually we'll have to. But for now we avoid them because of what we already know about them. The public schools have a history of underestimating his I.Q. by 20 points, and of denying him needed help. Besides, a private psycho-educational tester told us that Sam is a type of child the public schools simply can't serve, partly because he defies their classification system. He isn't eligible for what they offer that he really needs.

2. He needs a good therapist, which can run several thousand more dollars a year. Kaiser, our HMO, has assigned a psychiatrist to us, supposedly to counsel us and Sam. But her schedule is much too full to do real counseling. Nor does she seem to want that role. When we see her, she basically asks us, "What do you want me to do for you?"
3. He needs an assortment of different therapies and gadgets to get through the school day; for example, we had to get him his own laptop because of his poor handwriting. This is a one-time expense, but there always seems to be something extra like this that he needs.
4. What's more troubling is that there are a number of new "alternative treatments" for language disordered children. They all cost thousands of dollars. No one will pay for them because they're experimental. The only way to know if they'll help is to shell out the bucks and do them, and then try to figure out afterwards if they did any good.
5. Most troubling of all, in the Washington area, there are special schools like the Lab School, in downtown D.C., that have been designed expressly for kids like my son. But the tuition at these schools runs about 20K a year--as much as or more than a good private college. The public schools in our area have found him ineligible for special education. So the only way we could get him into a private special education school is either (a) to sue in court to try to demonstrate the inadequacy of Virginia's definition of "disabled" or (b) to pay out of pocket ourselves.

We're middle class people with no other minor children, yet we're really struggling. What happens to POOR people who have SEVERAL children with problems like these?

Not only are these kinds of learning disabilities common, their frequency is increasing in the general population and increasing even more among the poorer classes who live in areas less protected from environmental degradation. In male children, they can predispose the child to violence, especially if there's little or no intervention. Could undiagnosed and untreated learning disabilities be a hidden cause of violence in poor neighborhoods? Could they even be the single most important cause? It has been said that nothing makes a boy go bad faster than failure in school. And surely nothing predisposes a child to school failure more than an untreated severe learning disability. So why couldn't learning disabilities turn out to be a hidden cause of anti-social behavior that politicians refuse to see?

Another question: Why do we tend to steer away from seeing learning disabilities as a cause of violence? Why are we as a society so reluctant to make that connection?

My articles are "Condition Bears Gifts, Frustrations," by Liz Seymour writing for the Washington Post; and "Kids at Risk," by Sheila Kaplan and Jim Morris writing for U.S. News & World Report.

Seymour's article illustrates that even bright people, who are certainly educable, can be so disabled that our schools can't easily accommodate them. What's worse, they can continue to have problems throughout life, even in college and beyond. What do we do with these people? Surely we don't want to waste their talents. Nor do we want America to be the kind of place where capable people can't get jobs just because they're oddballs. It's debatable whether we can continue to be innovators in science and technology if we consign all our unusual thinkers to a sociopathic junkpile. (Albert Einstein is believed to have suffered from the same syndrome Meyer Kachel has. My source for that information is a book I read two years ago, Thinking in Pictures, by autistic author Temple Grandin. Maybe I'll use that source in my paper.)

By the way, our son Sam's case also shows that language delayed children can perform well in school with appropriate help. Now he's beginning third grade at the same mainstream private school he's attended since kindergarten. According to the last report card of his second grade year, he was consistently a "VG" or "VG+" student. (This is the equivalent of a "B" or "B+" student.) This is not too shabby for a kid whose first preschool teacher thought he might be retarded. As an added kicker, he's in a bilingual program. (He doesn't do as well in the second language, being more of a "C" student there.)

Regarding the second article I chose, Kaplan and Morris discuss another side of problems like Sam's--that they're growing more common, and that there seem to be environmental reasons why this is happening. They also discuss why we have been reluctant to see the connection between learning disabilities and environmental degradation. They suggest that we simply don't take learning disabilities seriously as a social problem. We underestimate their impact, so we underestimate their seriousness. After all, when you're busy worrying that toxic waste might kill you, why should you get all worked up by a chemical that won't kill you but might lower your kid's IQ by five points? Learning disabilities sound like a minor problem. But are they? What if they continue over generations? What if their effects are compounded by multiple environmental contaminants as well as by the social problems they help create?

I just suggested one such direction, above. In order to prove that the learning disabled are valuable people who should be educated, I could research the history of unconventional thinkers like Albert Einstein.

I also suggested that there might be a link between learning disabilities and juvenile delinquency and violence. Some research into the causes of juvenile violence might turn up some leads.

How could I explain why I think the public schools could do a better job of educating the learning disabled than they now do? I could go on site to public school special ed programs and to private special ed schools like the Lab School, contrasting the way the schools operate, what they teach, and how they teach.

How could I suggest that toxic agents in the environment are probably more damaging than is now believed? I could look at some case histories of corporate tendencies to minimize the effects of environmental degradation. Were they right then? If not, why should we accept their assurances now? Also, I could look at non-chemical forms of "envionmental pollution," like TV and video games.

How could I blast HMOs and insurance companies for their unrealistic denial that this is a medical problem? I could investigate the history of HMOs in recognizing new treatments for recognized diseases. I could investigate the history of their relationships with alternative medical therapies, like acupuncture. I could investigate how they deal with social and psychological problems that are now viewed as medical but were not viewed as medical in the past. A good example would be alcoholism and drug abuse. ALTERNATIVELY, I could simply explain the reason why most researchers now believe that the roots of these disorders are biological. What's actually happening in the brain of a toddler who has "semantic-pragmatic language processing disorder"?

Up till now, educational theorists have tried to deal with the broad issue of learning disabilities by finding a wide assortment of specific causes for different specific problems. They assume that using this model, all learning disabilities could one day be fixed by addressing each one individually. For example, we could tinker with a gene to fix an inherited disorder or at least prevent future generations from having that problem. Or we could find a pill that increased or decreased a certain neurochemical's level, thus enhancing brain performance. Or we could enrich a child's environment by adding extra-curricular activities, tutoring, and therapy to activate underperforming areas of the brain or reinforce weak neurological channels.

What do all these approaches have in common? They all demand that a child change the way his brain works to fit the environment offered him by his society. And they all ignore the possibility that twenty-first century society itself may be at least partly to blame for the mental disabilities of an increasing number of America's children. Different problems with different primary causes might have a shared secondary cause--often an environmental cause--that should also be addressed. For example, dyslexia might be caused mainly by a faulty auditory processing gene, whereas hyperactivity might be caused mainly by a food allergy. But both might be aggravated by exposure to one hour or more of daily TV. So before we medicate a child or change his genes, why don't we first try turning off the TV?

We think the answer is complicated. It's not. It's simple. The complicated but unimportant answer is that the lives of grown-ups are too difficult and full to spend lots of time entertaining their kids. The simple but important answer is that in today's society, a child who grew up without a TV set would be a freak. What parents want to raise their children as freaks? What children are willing to grow up as freaks?

What we really need is a combination of approaches to dealing with the sharp increase in learning disabilities in America's children. We need to educate America's parents and liberate them from the ignorant misjudgments of family and neighbors. For example, no kid who needs Ritalin should fail to get it because Aunt Maude accused Mom of drugging her kid to cover her parental inadequacies. But we also need to accept more responsibility as a society for creating an environment in which these problems have become much more prevalent.

For example, we can pass laws that protect kids from a degraded physical or social environment. After all, if we told big tobacco to deal with the fact that their products cause cancer, we can tell the entertainment and toy industries to deal with the fact that their products impair neurological development and make kids more anti-social. And we can tell those who contaminate the environment to stop threatening our biological heritage. Free enterprise doesn't mean that we must permit any enterprise that makes money, no matter what social havoc it causes. Were that the case heroin sales and prostitution would be legal businesses. They aren't. Moreover, cocaine would still be an ingredient of Coca-Cola. It isn't.

But there's another way in which we as a WHOLE society can take more responsibility for the cognitive impairment of America's children. We can pass laws that recognize learning disabilities as medical conditions, and we can require health insurers to cover them as such. HMOs and insurance companies will argue that this would create an intolerable financial burden for them. But if we anticipate and examine their logic, we'll find it's weak. For example, they'll probably argue that there would be no way to limit who would make a claim or how much treatment they'd be eligible to receive, since all parents would want free help to improve their children's school performance. They'll probably also argue that it's unfair to pass the cost of helping these children on to taxpayers and workers in general. What's wrong with this thinking?

First of all, it's ridiculous to assume that parents would be allowed to diagnose their own children's disabilities; therefore, anyone could sue medical insurers for any amount of aid for a trivial learning problem. Do we let the parents of childhood cancer patients do this? No. We treat them, thoroughly and not half-heartedly, if doctors say they're ill and should be treated. But currently the case with neurological conditions is not the same. For example, my son can't now get treatment and full counseling services for Tourette's Syndrome, a medical condition that has been widely recognized for years as a neurological disorder. Nor could he get a neurological consultation for an abnormal EEG, and the only excuse given was that it was not abnormal enough. The HMO was not even required to define what would be "abnormal enough." These kinds of abuses are wrong.

Secondly, it may be that covering these impairments would increase insurance premiums for everyone to some small extent. But so what? Poorly educated youths create social problems, like drug abuse, premature pregnancy, and violence. Taxpayers must pay for programs to address these problems. Companies also pay in the form of lost productivity and increasing difficulty in finding qualified workers for available jobs. Who's to say that the cost of helping kids with neurological problems wouldn't be much less than the cost of allowing those problems to go unresolved?