(Author's Note: The following manuscript was prepared in response to the release of the Guidelines for Diagnosing ADHD, issued on May 1, 2000, by the American Academy of Pediatrics. This is my attempt to provide a humorous look at a serious threat. JEJ)

A CHRISTMAS CAROL - DSS STYLE
(With Apologies to Charles Dickens)

The Setting: May, 2000 -- somewhere in the United States

The Major Characters:

Ebenezer Scrooge -- DSS provider at the local postsecondary institution, Scrooge has been in his position for an undetermined amount of time -- just long enough to get a little jaded;

Bob Cratchet -- A diligent and relatively successful student enrolled in the institution at which Scrooge is employed. Bob was recently diagnosed as having an Attention Deficit Hyperactivity Disorder. Bob is a first generation college student with limited financial resources, who is largely dependent on the advice and counsel of Scrooge to determine how best to present his disability to others in the campus community.

James Nephew -- A colleague of Ebenezer Scrooge from a neighboring institution, James finds Scrooge to be more than a little rigid in his interpretation of rules and regulations, but is inclined to excuse these excesses, believing that Scrooge's heart is in the right place.

The Ghosts of Guidelines Past, Present, and Yet-to-Be

---------------

(Our story opens in the office of Ebenezer Scrooge. We find him sitting at his desk, rubbing his hands in glee as he stares at his computer screen in awe. Enter James Nephew…)

NEPHEW: Are you alright, Ebenezer? I haven't seen you smile that much in some time.

SCROOGE: Alright? I am better than alright. I am thrilled. I am reading the new guidelines for diagnosis of Attention Deficit/Hyperactivity Disorder just released by the American Academy of Pediatrics. Have you seen them? Aren't they marvelous?

NEPHEW: Yes, I have seen them. I am obviously not as impressed with them as you are!

SCROOGE: How can you not be excited? This is what we have been waiting for. We have been crying out for diagnostic guidelines for ADD/ADHD for some time now. FINALLY, someone in authority has provided that guidance. Something we can count on. Something we can latch on to. Something we can use with confidence.

NEPHEW: Wait.. Back up. Are we talking about the same thing here? The guidelines I saw were for use by primary care pediatricians to use in diagnosing ADHD in children between the ages of 6 and 12! What does that have to do with us?

SCROOGE: But, James, don't you see? They have provided standardization to the process of diagnosis that will FINALLY give us a structure to adopt in determining what kind of documentation must be provided by all these so-called ADHD students who are suddenly showing up at our door. And speaking of those Johnny-Come-Lately's…

CRATCHET: (knocking tentatively at the door) Er… excuse me, Mr. Scrooge. I just wanted to check and see if there was anything else I needed to do before my finals next week to make sure the accommodations I need are in place.

SCROOGE: (grudgingly) No, Cratchet. Nothing else. You'll get your quiet, proctored setting and your extended time. But enjoy it while you can, Cratchet. I am sitting here looking at a new set of standards that I can't wait to get in place. Standards for what constitutes a REAL diagnosis of an Attention Deficit Hyperactivity Disorder. The students who come after you -- the ones who conveniently "discover" they have ADHD after they get to college -- are going to have a heckuva time trying to substantiate that claim if they can't show a history dating back to childhood. It's going to make my life a WHOLE lot easier.

CRATCHET: (confused) Um, yes, Mr. Scrooge. (He starts for the door and then turns back). Was there something wrong with the documentation I brought you of my disability, Mr. Scrooge? Was there information missing that you needed?

SCROOGE: (exasperated) Yes. No. It isn't that the diagnostician didn't give me a lot of information. It is just that there is no consistency to the information I have on you and the next kid in my files with ADHD. And there is no guarantee that what I have in my files will be the same thing Nephew, over here, wants if you decide to transfer to HIS school. We HAVE to get some consistency here. (Cratchet exits, looking worried…)

NEPHEW: Ebenezer, you worry me. You just told that poor fellow that there were new STANDARDS regarding ADHD diagnosis. Even the AAP isn't suggesting them as standards… they refer to them as "guidelines." You are going to tread slowly on this, right?

SCROOGE: Why are you so hesitant? This is what we have been waiting for. We can incorporate a call for THIS information in our documentation requirements; if you don't have this kind of history, going back to childhood, then you don't have ADHD that is significant enough to qualify for protection under the law. Think of how much easier it will make it for those of us in DSS. We won't have to take the time to conduct individual interviews and try to assess the significance of the impact of their problems on academic pursuits. If the paper trail doesn't take them back to grammar school, we're off the hook! And a good thing, too. The number of students requesting services on the basis of disability has almost doubled in the last 10 years. The resources provided to this office by the institution certainly haven't!!! And, besides, this just feels SAFE. What better source to rely on than medical doctors -- pediatricians at that. Who doesn't believe their pediatrician?

(Fade out)

(Fade in later that night. SCROOGE is at home in bed, tossing and turning, and muttering, "Standards or guidelines. What difference does it make? Consistency. That's what we need. Consistency." A dim light appears above the bed, and a disembodied voice drifts down from above…)

VOICE: Ebenezer… Ebenezer Scrooge, wake up!

SCROOGE: (sitting up, clutching the covers to him) What? Who is it? Who is there?

VOICE: Ebenezer Scrooge -- tonight you will be visited by three spirits who will help you to remember where you have been and see where you are headed in your use of diagnostic guidelines and protocols. Heed them well. Listen and remember. And THINK, Ebenezer. THINK.

SCROOGE: Wait! Who are you? How dare you question my professionalism or my judgement. Who is there? What manner of person are you? What gives you such authority?

VOICE: I have no authority over your actions. I can only hint at your options. I am not even a person. I am the essence of the academic aspirations of the legions of students with disabilities whom you have seen and will see. And I am the echo of the many voices of other professionals, past and present, who wrestle with the same issues and concerns that trouble your sleep tonight. Use this opportunity. Revisit your past decisions, and see the consequences of you future actions. And THINK, Ebenezer, THINK!!!

(the light above the bed fades out, to be replaced by a bright light from the corner of the room, framing the outline of a lithe figure dressed in voluminous, flowing robes. She approaches the bed and sits down facing Scrooge…)

GHOST #1: Hello, Ebenezer. I am the Ghost of Guidelines Past. I have come to take you on a little journey. Close your eyes, Ebenezer, and let the pictures come. Tell me what you see… (she reaches out and takes his hands in hers)

SCROOGE: (obediently closing his eyes) I see… I see myself! But I am so young! I am talking to a student. OH! I remember that student. That is the first student I ever met at the postsecondary level who told me he had a learning disability.

GHOST #1. That's right, Ebenezer. The year is 1982. Do you remember what happened to that student? Do you remember how you approached that student and the ones to follow?

SCROOGE: Gee, I'd forgotten. Things seemed somehow so much easier then. Before we had all these kids showing up with non-visible disabilities, we never worried too much about the form of the documentation they provided. In all the years I have been in this business, I've never had someone roll into my office in a wheelchair whom I had any reason to doubt NEEDED the wheelchair. But when you can't tell by looking at them what the problem is, you have got to have SOME rules to go by. I remember now. There was almost nothing to help us figure out what to look for in a college student with a learning disability. So we looked for the only guidelines we could find -- and found something that seemed useful being used in the K-12 system under IDEA. So we picked it up and dropped it in place. "Testing must be done every three years." "At least a 1.5 standard deviation discrepancy between ability and performance." What a mess that turned out to be!!!

GHOST #1: What do you mean? Why didn't that work out?

SCROOGE: Those guidelines were drawn up for the purpose of determining eligibility for special education services, not for diagnosing a disability as defined under 504/ADA. But it took us a long time to figure that out -- and it took even longer for the public schools to figure it out. They used to assume that if you weren't bad enough off to qualify for special education classes, then you didn't have a disability and didn't get any consideration. Now, at least, they are providing 504 plans for the students who are disabled but don't need the intensive services of the special education program. But it took a long time, too, before we figured out that the information they needed to know if the kid was eligible for special ed didn't necessarily give us the information WE needed to be prescriptive in assigning accommodations to students at the postsecondary level that would assure equal access. Besides, there were a lot of students coming up from the K-12 system whose diagnosis seemed "iffy" at best.

GHOST #1: What did you do, Ebenezer?

SCROOGE: It wasn't just me. We, as a field, came together and said, "we have GOT to have some consensus here." So over time we have developed some standards that we can use in determining if the student REALLY had a disability. You don't have to worry about being prescriptive with accommodations if they don't qualify for accommodations -- and if the documentation they present doesn't meet the standards established professionally, then there is nothing more to discuss.

GHOST #1: Twice you have used the word "standards." When did the "guidelines" suggested by others for gathering useful information become "standards" for use in assessing the comprehensiveness of documentation?

SCROOGE: What difference does it make? We need consistency. Why do you plague me with such trivia, Ghost? Over time we moved away from the rules we adopted from the K-12 system and developed our own rules, more appropriate to our setting. Why do you remind me of our early mistakes in the field of LD. What has that to do with my current dilemma, Ghost? Ghost?

(he opens his eyes to find that Ghost #1 has vanished and only the echo of VOICE is heard whispering, "Think, Ebenenzer, THINK!" As Scrooge drops back on the pillows, looking confused, another light appears from the opposite corner and Ghost #2 steps forward)

GHOST #2: I am the Ghost of Guidelines Present. Let me show you what others are thinking and saying tonight.

(she sits on the bed and places her hands on Scrooge's forehead -- a Vulcan mind-meld??? Scrooge initially draws back, then sighs and closes his eyes, letting the images flow)

GHOST #2: What do you see, Ebenezer Scrooge?

SCROOGE: I see Bob Cratchet in a cramped little apartment with a young woman sitting next to him on the couch. There is a little boy glued to the TV set, watching cartoons. Why, I can hear them!…

WIFE: Why do you look so worried, Bob? Did something happen at school today?

CRATCHET: I'm sorry. I'm a little pre-occupied. I had the strangest conversation with Mr. Scrooge today. I'm not sure he believes I have ADHD. And I don't think he believes I should be getting any kind of accommodations. I think he thinks I am cheating the system, somehow.

WIFE: That isn't fair. You work hard in all your classes -- much harder than most of your classmates. And we passed up a trip home to see your family at Christmas time to pay for that evaluation done by the psychiatrist, and the learning specialist. Your medication costs us so much every month than we haven't had a night out for dinner at a restaurant in weeks. Why does he think that we would give up all that if it weren't real? Who does he think he is???

CRATCHET: Now, Honey, relax. He didn't come out and say he thought **I** was lying or faking it or anything. He just seems to feel that there are lots of people out there who may be, and that he couldn't figure out how to tell the real ones from the fakers. But that isn't what worried me. Whether he likes it or not, I've got the documentation I need to get the accommodations I need now, today. But Mr. Scrooge says the rules are about to change and that students who don't get diagnosed when they are young WON'T get recognized later on. You know we have been talking about some of Tiny Tim's behavior. He is SO like me when I was a kid. But you know we can't afford anything more than the health care coverage we get under my student plan right now. You told me that Tiny Tim hasn't seen the same doctor at the Health Clinic any of the last three times you went. What if he DOES have ADHD. What if we can't afford to get him to someone who knows what to look for or what to ask -- or who cares enough to follow through. It isn't just his schoolwork now that will suffer if they adopt these new rules Scrooge was talking about. He may NEVER get any help. (voices fade)

SCROOGE: Wait, Ghost. Bring them back. I want to hear the rest of that conversation. I want to hear what they decide to do!

GHOST #2: They are gone now, Ebenezer. But I have more for you to think about. What do you see? What do you hear?

SCROOGE: (annoyed) I see James Nephew. Undisciplined fool. He argues with me all the time about the relative merits of running a tight ship! I recognize those other two he is with. They are the disability service providers at the other two colleges here in town. Why are they meeting without me?

GHOST #2: Listen, Ebenezer. Listen and THINK…

NEPHEW: No, really -- that's what he told this poor kid… (imitating Scrooge)… ". The students who come after you -- the ones who conveniently 'discover' they have ADHD after they get to college -- are going to have a heckuva time trying to substantiate that claim if they can't show a history dating back to childhood…"

DSS PROVDIER #1: That's scary. I don't mean just that Scrooge would say something like that to the student. I mean it's scary to think about all the other folks out there who will eagerly buy into that kind of thinking. Heavens, we have had enough problems over time with people wanting to discount the difficulties of any individual diagnosed with a learning disability or ADD/ADHD after childhood. Can't you just hear them now? (in a deep, booming voice) "If it were REALLY a substantial limitation it would have shown up in childhood. His childhood pediatrician would have known. After all, we trust in our medical professionals. They would have noted it if something were wrong. They didn't. HE COULDN'T POSSIBLY BY ADHD!!!"

DSS PROVIDER #2: (laughing) You do that very well. You sound just like all those "experts" I hear talking about our postsecondary students with ADHD, based on their exclusive experience with KIDS who have ADHD. Why are we the only ones who recognize that they are different populations?

NEPHEW: Because we are the only ones who WANT to recognize that everything in the world that is known about children with disabilities doesn't necessarily tell you everything in the world you need to know about adults with disabilities. THAT is the scary part for me -- the way people in the DSS field are likely to latch on to these guidelines, inappropriate as they are for our population, and try to find a way to use them in developing documentation guidelines that they can hide behind.

DSS PROVIDER #2: Are these guidelines so very inappropriate for our population? I haven't had a chance to look yet.

NEPHEW: Yeah, I think they are. Even within the accompanying statement from the AAP, it says that these recommendations are for the diagnosis of ADHD in children in the 6-12 age range. Not only are there questions being asked in this protocol that would be inappropriate or impossible to track for an older population, these are guidelines for what the physician should ask -- not how they should evaluate the information they receive from their inquiries. I suppose that is what upsets me most about Scrooge's attitude about all this -- his blind acceptance of a set of rules he can live by, simply because they come from a source that sounds official.

DSS PROVIDER #1: I can't figure out why anyone at the DSS postsecondary level would be thrilled with these suggestions anyhow. These guidelines are set up to encourage the primary care pediatrician to take the responsibility for the sole diagnosis of ADHD in the 6-12 age group. Heck, we've been working so hard for so long to get away from those darn "prescription pad diagnoses" -- the note on the prescription pad that says, "Yep, he's LD!" or "This student has ADHD. I know that because she told me so." (the others laugh) But these guidelines would push us right back in that direction. Last week I told a student that I could not accept a letter from her medical doctor as adequate documentation of LD/ADHD. She needed to have additional testing done by appropriate professionals regarding the impact of the disability on her learning and functioning. If the primary care pediatricians are encouraged to unilaterally diagnose ADHD in kids, to attribute symptoms and apply criteria from the DSM-IV, why shouldn't the adult-care physicians step up to assume the same level of authority? THEN where will we be?

NEPHEW: Ah… but you forget. The pediatricians will do it all before they turn 12. After that, it won't matter because it can't be real! (the others hoot derisively) But you are right -- it seems to me that these guidelines are a step BACK, not forward for us. I think that is where poor Scrooge is going to find his downfall. He wants so badly to have everything looking nice and neat, to have rules in place that govern his decisions, that he is going to latch onto these guidelines -- or any other guidelines someone is willing to wave under his nose -- and put them in place without thinking about whether they are going to help us be prescriptive in the accommodations we assign. (voices fade)

SCROOGE: (blustering) That's ridiculous. I am not being rash in my decisions. I am being deliberate. I am trying to restore some order. How else can I face the faculty at my institution with a straight face and say, "YES! This person has a disability and should receive these accommodations," if I don't have anything but my own judgement to rely on. Don't get me wrong. I have lots of experience in this area. I will take these new guidelines -- or whatever guidelines are provided to those of us out in the field -- and I will use my experience to make appropriate determinations of accommodation IF the students can establish that they really have disabilities. But I have all this experience. What about the newcomers to the field out there who have no experience. We HAVE to provide them with some rules to function on -- some order for their actions. If THEY don't have the expertise, then shouldn't we help them by providing them with expertise from a credible source that they can rely on? Shouldn't we, Ghost?

GHOST #2: (softly) I don't know, Ebenezer. Should we? Is there a difference between the role of gatekeeper and the role of service provider? Are they one in the same? Think, Ebenezer, THINK! (light fades and Ghost #2 disappears)

SCROOGE: (sighing, wearily) Let's get this over with. Is there another Spirit here waiting for me? Show yourself.

(a dim light appears above the bed and grows brighter as Ghost #3 slowly drifts down from above to sit before Scrooge).

GHOST #3: I am the Ghost of Guidelines Yet-To-Be. Are you ready to peer into the future and see the results of your quest for clarify, order, and consistency?

SCROOGE: (with determination) Yes! Yes, I am ready. I know what you are going to show me. An orderly place in which the students with REAL disabilities are getting quality services and where there is uniformity from one institution to another. How much more credible our actions will seem to the campus community when we can proudly assure them of the quality control procedures we have established. I am ready, Ghost. Show me! (Scrooge closes his eyes. Ghost #3 passes her hand before his closed eyes and Scrooge is engulfed in a bright glow)

GHOST #3: What do you see, Ebenezer?

SCROOGE: I see a young man walking out the door of the Physics building at my school. He looks dejected. He seems familiar. He looks almost like a younger version of Bob Cratchet. But how can Bob Cratchet be younger if we are looking at some time in the future?

GHOST #3: That is not Bob Cratchet. That is his son, Tim. He has just received his first semester grades. He is doing poorly in school. His financial aid is in jeopardy. If only he could have gotten a better grade on his Physics final. He just couldn't concentrate in that huge classroom with dozens of other students shifting in their seats, and their anxiety almost palpable in the room. He did well on the questions he answered, but he just didn't get a chance to finish all the questions presented.

SCROOGE: Why didn't he request a quiet, proctored setting or extended time. I thought he had ADHD like his father?

GHOST #3: He does. But the testing wasn't done until he was in high school. He has no childhood history of ADHD. The school policy says that if you made it all the way through childhood without being diagnosed then your ADHD cannot be a substantial limitation. You don't have a disability as defined by the law, and accommodations are reserved for those who have REAL disabilities.

SCROOGE: You mock me, Ghost. But this must be an exception. Surely the development of firm rules and clear policies has helped to regulate the provision of accommodations in higher education. Where am I, Ghost? Let me see my office. (The Ghost passes her hand before his closed eyes once again) Ah, there I am. I am sitting concentrating on the computer screen. OH! I am playing solitaire. See how well the system is working now, Ghost? I never used to have time to play solitaire. I was always too busy weeding through student files and trying to contact this diagnostician or that faculty member. Obviously implementing some clear guidelines has made it possible to streamline our services.

GHOST #3: Do you see anyone else, Ebenezer?

SCROOGE: Yes -- here comes my Administrative Assistant. She is carrying a stack of folders, and some accommodation letters. What's that she is saying?

ADMINISTRATIVE ASSISTANT: Here is the latest group of folders, Mr. Scrooge. I checked in the documentation provided by the students, using the guidelines you gave me. Student A is missing the scaled scores from his WAIS-R, so I am sending him the, "This documentation doesn't count" letter. Student B was last given 3 1/2 years ago. We can't accept documentation that old according to our guidelines, so I have sent him the "you need to get this re-done" letter. By the way, when he DOES bring in the updated testing I think he is going to qualify for everything we have to offer. The test scores he has are the lowest I have seen. Student C claims to have ADHD and has a lot of documentation from psychologists, a learning specialist, and some psychiatrist he recently saw, but some of the pieces from our protocol aren't there so I have told him, "no." I have checked in the documentation on all these other students. Everything is in order, so I am sending the blue accommodation letter to all the LD kids, the yellow accommodation letter to the ADHD kids, and the green one to all the kids with psych disabilities. (Voice fades)

SCROOGE: Wait, Ghost. This isn't right. My Administrative Assistant didn't have the expertise to read those diagnostic reports and make decisions when I hired her. And she certainly never had the experience necessary to assign accommodations on the basis of what she reads in those files. Has she gotten a degree in some related field in the interim, or has she just been working with me so long that she has gained that experience over the years?

GHOST #3: Neither, Scrooge. There is no need for her to have training or experience in reading documentation or assigning accommodations. Your guidelines have made all that unnecessary. She simply uses the well-established guidelines as a kind of checklist in assessing whether the documentation is all in place to qualify the student for services. If so, then she pulls the appropriate form letter and the job is finished. Isn't that wonderful? And you can be assured that all students are being evaluated in the same way, using the same standards. You have finally achieved the consistency you have so long sought.

SCROOGE: (confused) Is everyone using these guidelines? Does no one making independent determinations any more, about the significance of the student's problems in functioning or the kinds of support that are necessary?

GHOST #3: The other service providers have slowly given in to the pressure created by those of you who led the field in embracing such guidelines and who campaigned hard for their acceptance. And, of course, the testing agencies and licensing bodies supported these stringent standards -- it made their job much easier. Many students from rural areas or disadvantaged backgrounds couldn't even ask for accommodations in such testing because they couldn't afford the documentation or didn't have access to the same quality professionals your guidelines require. Of course, there are still some holdouts -- like your former friend James Nephew -- who insist on relying on their own judgement and experience in assigning accommodations. But they can't fight the tide much longer. Why are you troubled, Ebenezer? Isn't this what you wanted?

SCROOGE: No! No, that isn't what I wanted. I didn't foresee the question of WHETHER someone has a disability being more important than the question of what services to provide to someone who DOES have a disability. I am a service provider, not a clerk. I don't want to see a student's legitimate need for accommodation ignored because of some arbitrarily-established hurdle. No, No, No!!!

GHOST #3: Then think, Ebenezer, THINK!!!

(The Ghost disappears as the lights fade out entirely. Morning sunlight streams in through the window to reveal Scrooge, resting back on his pillows. The alarm clock next to the bed rings and Scrooge awakes with a start to shut it off. He looks slowly around the room and at the crumpled bedclothes where the Ghosts sat, then smiles broadly.)

SCROOGE: God Bless Us, Everyone!!!

The End