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April, 2000, Volume IV, No. 4_________________________________________________ D A I S A newsletter from Disability Access Information & Support Providing information and technical assistance regarding issues of disability in higher education ------------------------------------------------------------------------ April, 2000, Volume IV, No. 4 Jane E. Jarrow, Ph.D. ___________________________________________________ <<< CONTENTS >>>
1. A NOTE FROM THE EDITOR << A NOTE FROM THE EDITOR >> Tragedy, pathos, a promise unfulfilled, a touch of comedy, a sense of foreboding, a hope for redemption. Those are the themes of this newsletter As I was trying to think of some witty way to introduce the various topics of this newsletter, I found a jumble of (half remembered?) literary << AAP GUIDELINES ON THE DIAGNOSIS OF ADHD >> Last week the American Academy of Pediatrics released its guidelines for the diagnosis of ADHD in children ages 6-12 (the guidelines can be viewed at
Now, I have read through these new guidelines. I am NOT a diagnostician, and I have limited knowledge of how to read ADD/ADHD documentation in order to be prescriptive in assigning accommodations. But
* These are guidelines offered to pediatricians for diagnosis of ADHD in * The guidelines suggest that the pediatrician can and should make the diagnosis independently (that is, without consultation with other medical professionals) if he/she feels it is warranted based on the information collected; * The information on which pediatricians are encouraged to make a diagnosis of ADHD is largely anecdotal, provided through interview and information gathering from parents and teachers and through observation of the child. The information highlighting problems must be reported consistently over a number of visits stretching out over time. Now, call me cynical, but if the parents are concerned enough to bring the child back to the pediatrician 2-3 times within a period of 6 months (at some cost) to be evaluated for this particular difficulty, what do you suppose the odds are that the information they provide that triggered their concern will be enough to convince the pediatrician that the problem is real. * The only thing STANDARDIZED through these guidelines is the questions that it is recommended be asked. There is no suggestion of what to do with the answers received, or how to evaluate the severity of the problem on the basis of those answers. Ironically, while we have worked diligently to move away from the medical model in the support/service paradigm for students with other disabilities, I fear that this inappropriate (for our population) offering of rules from a presumably authoritative source will be hailed by many as the anxiously sought end to their quest. There are those in the field who have been longing for something concrete to use as guidelines in the documentation required of postsecondary students with ADHD. And therein lies the danger. This newsletter is shorter than usual because I have provided something LONGER than usual to be read (or pulled down) online. I sharpened my writer's quill last week and penned a new play focusing on the use and abuse of "guidelines." I invite you to visit the Public Library on my website and take a peak at the "Some Light Reading on a Heavy Topic." Specifically, you can go to http://www.janejarrow.com/public_library/index.html to read "A Christmas Carol, DSS Style" (with apologies to Charles Dickens). The main character is "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." The protagonists are the Ghosts of Guidelines Past, Present, and Yet-To-Be. Read it and weep... << BEYOND CIVIL RIGHTS (Reprise) >> (The following article was first published in the July, 1998, edition of the DAIS Newsletter. It is reprinted here because it needs to be said again -- and because it serves as the basis for the article which follows.) As the keynote speaker for the 1998 AHEAD Conference, John Hockenberry presented an interesting perspective on the future of the disability rights movement. No. That isn't quite right. He presented an interesting perspective on why the disability rights movement may not be (at this juncture in our history) the best foundation on which to build toward the acceptance and inclusion of people with disabilities in our society. The following is nothing more nor less than MY interpretation of his message, offered for your consideration... Hockenberry talked about the history of civil rights movements in general, and of the disability rights movement (with its Section 504 and ADA mandates) in particular. He drew parallels between the fight for equal rights for persons with disabilities and the similar battles fought by minorities and women in this country. And he noted that the civil rights protection offered to those groups that have preceded us brought them a long way -- and then stopped. Everything you read about the Glass Ceiling in corporate America, all the backlash we hear about Affirmative Action programming, and the distressing reports of limited availability of affordable health care and education to these "protected" populations bring us back to the same conclusion. The concept of civil rights -- of equal access -- is a philisophical goal, NOT a strategy for achieving equity. We need a better strategy. Throughout the history of this country, we have seen systemic change occur only when the populace believed that it was in their own best interest to change. Ramps leading to buildings mean that wheelchair users can get in the door -- universal design that INCLUDES ramps mean than everyone can get in the door. Hockenberry's message, as I understood it, was that it is time we started to look toward including all people, regardless of disability, because we are stronger as a society the more people we have fully participating. Yes, people with disabilities have traditionally been excluded from opportunities available to others. Yes, we have laws that require change to mitigate those circumstances. And, yes, those laws have brought us to where we are today. But people with disabilities will never achieve parity so long as we focus on what is OWED to us for past indiscretions. Society's guilt at past failures and obligation under current law can get us a lot we didn't have before -- but it won't get us where we want to go. Let's bring this discussion back to the realm of postsecondary education. What does it mean to include persons with disabilities as a strategy toward strengthening our institutions instead of an obligation to discharge? It means that every time the conversation about a request for accommodation begins with, "Are we obligated to provide..." or "Do we have to..." or "Where does it say that we must...", we have already taken a step back. Can we replace those questions with, "Is it reasonable to ask..." or "Is it appropriate to provide" or "Should we choose to...", instead? When I was in college 25+ years ago, the vast majority of students enrolled in higher education were of traditional college age. They were full-time students between the age of 18 and 22, and had come straight out of high school. Today, the percentage of traditional students has shifted downward dramatically, especially at two-year institutions. Class schedules at such institutions are adjusted to allow for work schedules and family responsibilities. Daycare facilities are often provided, financial aid formulas have been adjusted, and institutions readily encourage students to use on-the-job experience to enhance their classroom learning. Perhaps institutions of higher education can use their own appropriate and welcomed response to the changing demographics of traditional/nontraditional students as a model for embracing nondisabled/disabled students in their planning, policies, and procedures. Perhaps the strategy we need to adopt in order to move in a positive direction is to recognize students with disabilities as a population to be added to our mission and focus in higher education, rather than viewing their presence as an inconvenience or obligation. Perhaps... << WHY CAN'T PEOPLE JUST GET ALONG??? >> I decided it was time to re-issue the rundown on Hockenberry's position (above) because I am increasingly discouraged by the tone of messages I read on the listservs and correspondence I receive asking for input/advice. More and more these missives seem to focus on what the law says MUST be done -- rather on what could be done or should be done! Long ago, in a discussion of the relative merits of Section 504 and IDEA, I remember hearing a respected colleague suggest that 504 was actually a much better law than IDEA in furthering the status of persons with disabilities. IDEA is VERY SPECIFIC as to what must be done in order to assure compliance with the law. Because of that, it is possible to meet the letter of the law and be in full compliance with the statute and regulations without coming close to meeting the intended outcome -- an full educational experience for a child with a disability. I suppose that is the part that gets lost too often. IDEA never started out to be about systemic rules and regulations that govern services. It was supposed to ensure the opportunity for each child with a disability to maximize his/her educational experience -- INDIVIDUALLY. But somewhere along the line, as the numbers grew, the SYSTEM became more important than the students. By contrast, Section 504 said, "you may not discriminate on the basis of disability." There were (are!) very few specifics as to what that meant in the context of higher education. Thus, you couldn't comply with the LETTER of the law without also complying with the SPIRIT of the law! You were REQUIRED, under Section 504... to do whatever was necessary in order not to discriminate! It seemed simple enough. But that was then and this is now. Maybe it is the coming of the ADA, the increasing numbers, and the need to formalize arrangements and mechanisms. Maybe it is a generally confrontational approach to all sorts of problems/issues in society today. Maybe it is the alignment of the planets. Whatever it is, I see some disquieting changes occurring in the response of both institutions and students with disabilities that suggest we have arrived at a critical juncture in the progress of disability rights, especially as played out in postsecondary institutions. Last week I was reviewing the policies/procedures developed by a postsecondary institution to guide its response to the needs of students with disabilities. All the pieces were there. All the policies that I think NEED to be included (to be proactive in arranging institutional resources) were in place. But the rhetoric sounded -- weary. I can't think of another way to describe it. What came through very clearly was a tone that suggested:
It struck me that if I were a student with a disability, reading through these policies and procedures, I would feel that I was entering a less-than-inviting environment. I would be protected -- but I may never be comfortable. I get the same feeling too often these days, when I read responses to questions on the listserv that BEGIN (rather than end) with statements like "You aren't required to do that. If you want to know what the courts say you are required to do in this case, check out X, Y, and Z legal citations." I understand all about UNreasonable requests, and I don't think that any institution should be granting inappropriate accommodations out of a misguided sense of obligation (or pity!), or because of fear of litigation. I just wish, somehow, that we could begin such reviews by discussing why something is inappropriate, rather than having everything boil down to whether or not you MUST do it, according to law. I thought civil rights statutes were meant to be the floor -- the foundation -- on which assured opportunity could rest. Lately, it seems that 504/ADA are being used as a ceiling, to define the upper limits of what we are prepared to do to incorporate persons with disabilities in our society -- and our institutions! At the same time, I am equally as disturbed when I hear people with disabilities responding with anger and invective instead of reason and discourse to discussion of appropriate services/accommodations. There was a fascinating discussion recently on the DSSHE-L in which someone questioned why some students with disabilities thought being rude was a more effective way of gaining cooperation than being polite. The response from some of the more aggressive disability rights advocates was, "Why should we have to ask politely for the things we are entitled to? Why should we have to be docile and submissive in demanding our civil rights?" From the time most children are old enough to understand the concept and utter the words (or make the signs?!), most parents teach their children to say "please" and "thank you" when they are given presents -- or when someone passes the mashed potatoes at dinner. I never considered asking my daughter to beg for assistance in turning on the light in her bedroom, before she could independently flip the switch. But I taught her to say "thank you" when someone helped her do it. Why? Because it is polite to do so. Because people interact more comfortably and more willingly in situations in which they feel appreciated and in which they feel their efforts are worthwhile. Why do we consider good manners to be appropriate to teach a child and inappropriate to expect from an adult? Maybe that is a p |
Welcome to the NEW Home of DAIS!Disability Access Information and Support (DAIS) is an important resource to the higher education community, providing a menu of services for those concerned with disability and access in higher education. Institutions and organizations can contract for help from DAIS, in the person of Jane Jarrow, Ph.D., for a variety of services. The growing list of DAIS publications and activities includes resource materials to assist in interpreting/fulfilling legal mandates, a variety of professional development opportunities, policy/procedure reviews, consultation regarding quality assurance and compliance, and information to aid in understanding the philosophical underpinnings of providing quality service to people with disabilities in the postsecondary environment. Check out the site orientation given on the home page under the heading of, "Where to look, and what you'll find at daisweb.com!" |