Wehmeyer, M. (1999, June). A bridge to where? Transition, self-determination, and the new millennium. Paper presented at the 1999 annual OSEP Project Directors' Meeting, Washington, DC.
Loews L'Enfant Plaza Hotel
Washington, D.C.
June 15, 1999
A Bridge to Where? Transition, Self-Determination and the New Millennium
I feel privileged to have the opportunity to share some of my thoughts with you this morning, and would like to express my appreciation to Tom Grayson and Janis Chadsey for that opportunity. I’d also like to thank Lynda Leach for her assistance. One of the features of the transition project directors meetings that has always appealed to me has been the high quality of the keynote speakers, and I’m relieved that, in his speech yesterday, Andy didn’t note the slipping quality of keynote speakers as further evidence of the decline of the transition movement. Perhaps he simply couldn’t do so without implicating himself, but I’m relieved nonetheless. This is a unique opportunity because so many of the leaders in the transition movement are here today and I’m going to take advantage of that and divert somewhat from my usual talking points which assume that a large portion of the audience doesn’t know what self-determination and thus tend to focus on addressing the question "what is self-determination" and then discussing its importance to students with disabilities. I am going to assume, valid or not, that those of you in this audience have a broad knowledge base and don’t need me to stand up here and tell you what you already know. My purpose is to challenge us, corporately, to give thought to some complex but compelling issues that face us, and, hopefully, to further the conversation started yesterday by Andy.
Those of us who have been involved in or aware of the transition movement since it emerged in the mid 1980s have become accustomed to the metaphor of transition as a bridge to the future. So accustomed, in fact, that the cynical among us may be inclined to dismiss the bridge analogy as cliched and overused. Yet, despite its pervasive, and sometimes trite, usage, in all fairness, the metaphor is an apt one. The imagery that "bridge as metaphor" evokes for each of us is likely different. When I think of a bridge, the mental picture I have is that of a bridge that used to span the Missouri River between Boonville and New Franklin, Missouri. My maternal grandparents lived in Boonville while many of my father’s relatives lived in New Franklin. The bridge in question was a steel girder structure built in 1924 with four arches spanning its length, connecting Boonville and New Franklin via U.S. Highway 40. What I remember most about that bridge was that instead of having a concrete roadway, the cars actually drove over a metal grid surface. If you were walking across the bridge, you could look down 73 feet below through that metal grid and see the brown waters of the Missouri swirling violently around the bridge’s concrete posts. With the movement of the water, the swaying of the bridge due to traffic and wind, and the whining noise of tires on the metal grid, walking across this bridge was an adventure in its truest sense. I did so regularly because my aunt, uncle and cousins operated a small grocery store just on the other side, the Howard County side, of the bridge, and a trip over there was almost guaranteed to result in a free Grape Nehi. Until I was too old to do so, however, I would clutch my mother’s hand tightly as we got farther out on the bridge and, when too old to do that, I simply refused to look down and focused instead on a point on the shore on the horizon. Truth be told, even today the memory of that bridge and my walks across it are tinged with anxiety and apprehension.
This is an aspect of the bridge metaphor that we don’t often consider… the fear and anxiety associated with moving from one place to another. In her wonderful book, I raise my eyes to say Yes, Ruth Mercer described her emotions about living in the community for the first time with these words:
I had never had a place of my own. As a result, I had never worried about buying groceries and planning meals, paying the rent and the phone bill, balancing a checkbook, making appointments, figuring out how to keep the appointments I made -- all of the things adults just do. But starting out in society at the age of 28, after living at a state institution for people with mental retardation for sixteen years, I found these everyday tasks confusing and wonderful and frightening.
Ruth’s transition to the community took place later in life, but "confusing and wonderful and frightening" may be as apt a description of the transition process for adolescents as any. Crossing that bridge is frightening. What Ruth Mercer discovered when she had the chance to live on her own was that living in the community means negotiating a series of problems … large problems such as how to pay the rent or get enough to eat and small problems such as what to do on a boring rainy afternoon. In Belchertown, the institution in Massachusetts where Ruth lived before her move to the community, she did not have these problems. The state coffers paid the rent, dieticians set the menu, and someone else planned her daytime activities. How did Ruth respond to the sudden onset of problem after problem inherent in her move to the community? Did she long for the days when she didn't have these problems or didn’t have to take any risks? Of course not. Life in the community is, indeed, full of problems and risks and anxiety… as well as the joys of leading a rich, full existence. In fact, our society essentially defines adulthood by the degree to which we address those problems, take such risks, and assume control over and responsibility for our lives.
It has become more and more evident that one important aspect of being community builders, which I would propose is our true purpose in transition, is to support and promote the self-determination of individuals with disabilities. That is what Robert Williams, formerly the commissioner of the Administration on Developmental Disabilities and a man with a significant disability, meant when he said that self-determination is another word for living the American Dream… another word for describing a life filled with rising expectations, dignity, responsibility and opportunity.
We stand, today, on the "Boonville" side of another monumental transition… the transition from one millennium to the next. I am fully aware of the dissension within certain circles about the "true" start of the new millennium but, with apologies to my friends in Virginia who have already heard my arguments for recognizing the year 2000 as the start of the third millennium, I for one have no hesitancy in celebrating that momentous event in a mere seven months. Most of you, I suspect, are familiar with the argument for designating January 1, 2001, instead of 2000, as the true and valid start of the millennium. It goes like this… because there was no year zero, the first century ended on December 31 of the year 100, and the second century began on January 1, 101. Every subsequent century has, thus, concluded on a year ending in two or more zeroes, and started on the 01 year, including those centuries that mark the passage of a millennium. Seems pretty straight forward… no zero year means the new millennium will start in January 2001, despite the allure and appeal of the three zeros in the year 2000. Well, as is almost always the case, it’s not quite that simple.
We are in this mess because of a sixth century monk named Dionysius Exiguus, which literally means Dennis the Short, who was ordered by Pope St. John I to prepare a new chronology in order to predict the dates for future Easter observances. Some of you may be aware that calculating the date for Easter, which is technically identified as the Sunday following the first full moon after the vernal equinox, is an incredibly complex process requiring sophisticated algorithms to compute. Because early calendars did not adequately balance both the lunar and solar cycles that drive the establishment of calendars, the dates for the celebration of Easter have, throughout history, varied widely, some years too early, others too late. This was obviously a problem for European countries which, by the sixth century, were primarily Christian. Thus, Dionysius was charged with developing a calendar that enabled the religious elite to more accurately predict future Easters. Like most calendars of that time, he began his counting of time with the foundation of the city of Rome. Counting forward from this starting point, he determined the birth of Jesus to be January 1, 754 A.U.C. (ab urbe condita, "from the foundation of the city") and, in turn, declared this date as January 1, of the year 1 A.D. (Anno Domini Nostri Jesu Cristi, or "in the year of our lord", A.D. for short). Thus, no year zero. However, lest we judge poor Dennis too harshly, there is a reason he did not begin with year "zero". Simply put, the Western mathematics of the 6th Century had not developed a concept of zero as a place marker. It would be two more centuries until Hindu and Arabic mathematicians devised the concept of zero in a usable way and not until the 8th or 9th century that the Western world would borrow this concept. The question before you today, therefore, is are we to stand on our 20th century mathematical concepts and stubbornly declare the year 2001 as the "true" beginning of the millennium or, as some have suggested, should we recognize the arbitrary nature of the calculation of years and simply assign the year preceding the year 1 (that would be the year 753 A.U.D) the zero-place?
Stephen Jay Gould, in his book Questioning the Millennium: A Rationalist’s Guide to a Precisely Arbitrary Countdown, came to the common sense conclusion that although the intelligentsia may pout and hold out for January of 2001, the rest of the world will rock and party at one second past midnight on January 1, 2000. I agree with Gould, primarily because the significance of the millennium lies not with the exact calculation of the passage of time, but instead with the earlier importance of the millennium as the end of a thousand year period before the apocalypse. For it was not the passage of time from years ending in a 9 to years ending in a zero that held the awe and fear of the first millennialists, but the approaching end of a period of time which, from their reading of the New Testament book of Peter, was to be the end-time. Thus, the first millennium approached with the promise and threat of apocalypse and eschatology. The end of the second millennium will, no doubt, bring about some such apocalyptic hysterics, but in our modern age we are more focused on the calendrical aspect of the millennium and not the eschatological aspects. But it is, I think, apropos that this historically momentous transition, moving from one millennium to another, has at its basis the fear and anxiety associated with the end-time.
I will refrain from equating the fear associated with the end of the world to the anxiety associated with the movement from adolescence and school to adult life, although there are likely valid associations to be made. I will, however, note that just as my image of the Boonville bridge is associated with a certain amount of childhood fear and anxiety and the passage to a new millennium is likewise associated with societal and religious fears and apprehension, so too, perhaps, should thoughts about the future of the transition movement into the next millennium produce a certain anxiety amongst those of us who care about that movement. Yesterday Andy Halpern, who as much as anyone else in the country has guided us to this point in the movement, spoke elegantly about that future. I feel a sense of "déjà vu" standing before you today, for it was at a transition project directors meeting in this same hotel in 1991 that I heard Andy deliver a keynote address challenging us to consider the types of outcomes experienced by students with disabilities. The theme that resonated through Andy’s speech then and which, I hope, will similarly echo through my comments today, is that unless we focus our efforts on providing transition services that enhance the quality of the lives lead by students with disabilities once they leave school and become adults, we are, without mincing words, wasting our time. Yesterday Andy spoke about the need to align the transition movement with the general education reform movement and discussed the central variables within the school reform movement; learning standards, curriculum and instructional strategies. He identified six areas where we have laid a solid foundation for focusing our future transition efforts, including (by way of review): (a) helping students to assume responsibility for their own education, (b) identifying and developing improved tools and programs for delivering transition-related instruction, (c) enhancing teacher skills for implementing transition programs and providing them with opportunities to use these skills, (d) involving parents more effectively in the education of their children, (e) facilitating the replication and utilization of proven programs, and (f) doing whatever we need to do to enhance the integration of secondary special education and transition programs within the overall structure of general education reform.
I will, predictably, target my comments to the importance of enabling students to take greater responsibility for their own education. However, before moving in that direction, I want to suggest that these six efforts represent a beacon for "how" we provide transition services in the next millennium, but that we must not lose sight of "why" we provide transition services. We certainly do need to know how to build that bridge to the future, but we also must be sure that the bridge leads to somewhere interesting, challenging, evocative and exciting… to someplace worth the fear and anxiety of crossing it. On a recent trip to New Orleans, I was looking out the window of the airplane at the swamplands below as we descended into the New Orleans airport and, as we flew over the Mississippi, my attention was drawn to a bridge spanning that legendary river. What drew my attention was not the bridge itself, but the fact that the road that went over that bridge ended almost immediately on the south side of the river. Automobiles crossing the bridge simply ended up in a roundabout that took them back to the bridge to return to the other side. It was, quite literally, a bridge to nowhere. Having grown up in Oklahoma and lived my adult life in Texas, I understand the politics of the region and suspect that the construction of that bridge had more to do with political graft than functional need. Nonetheless, the builders of that structure had created an all too accurate metaphor for many transition programs and services… they are a bridge to nowhere. At the Division on Career Development and Transition regional conference in Kansas City last October, Ann Turnbull asked those of us in attendance to consider the lives of the students with whom we have worked and to ask ourselves if any of those people lived "enviable lives". There was an uncomfortable silence, of course, because "enviable " is not a word often associated with the experience of disability in our country. True, there are innumerable people without disabilities whose lives I do not envy, and there is certainly no guarantee in our society that we or anyone we know will live "enviable lives". However, shouldn’t there be at least one among us whose student with a disability achieved an enviable life? Are the burdens of having a disability in our society so onerous, so insurmountable, that one simply cannot achieve an enviable life? Or have we, as professionals and parents, set our expectations too low and worked toward "achievable outcomes" that lead only to routinized, structured lives for students with disabilities?
Have you seen the television commercial advertising an Internet based job-search firm in which young children stand before the camera and make statements such as "When I get older I want to be downsized" and "I want to work in a dull, boring job the rest of my life and retire to a meager pension". The point of the ad is, of course, that nobody wants a bad or boring job and that nobody should have to settle for such a job. Everytime I see that commercial I think of the students I have worked with and the adults with cognitive and developmental disabilities with whom I have associated over the years. I have yet to hear any of them say that their life dream was to assemble widgets at a workshop or to live with six other people who also have mental retardation in rooms assigned to them by someone else. No, when I talk to students and adults with mental retardation about their dreams, I hear such unreasonable and unrealistic visions as living on one’s own, marrying, raising children, working at a real job, taking exotic vacations, having friends, and so forth and so on. They want supports and services that form a bridge to interesting lives that are worth living, lives that might even, heaven forbid, be enviable. Yet because too many in our field cannot see those dreams as valid, we too often design programs that become bridges to nowhere.
Regina Demaresse, who like Ruth Mercer lived in an institution for much of her early life, wrote eloquently about the erroneous dichotomy established too often in the human services between false and true hope. She wondered why we, as professionals, spend so much energy worrying about creating "false" hope when, as she herself experienced, hope may be the only factor to sustain an individual and to give them a vision and a purpose. She noted that hope is neither true nor false, it is simply hope, and wrote the following about her efforts to move out of the institution and to live in her community and about the support of her circle of friends in that effort:
In the end, I did move out of the institution and into the community; I am living in the kind of quiet, country setting I dreamed about; I do have the kind of assistance and help I had hoped for; and my time is spent writing the book I have always dreamed of, without the institution dictating where and when I could do all kinds of things I like best. I am glad that a group of us got together to share some "false hope".
For some reason, we have taken on as part of our professional identity the role of arbiters of reality. By that I mean that we, as Demaresse suggested, have become so concerned about creating "false" hopes and expectations for students and thus, presumably, exposing them to the risks associated with failing, that we suppress opportunities to pursue one’s vision and dreams and limit our expectations to what is already known. In so doing we also limit the opportunities of students with disabilities to achieve true equality and inclusion. Earl Nightengale stated that "you can measure opportunity with the same yardstick that measures the risk involved. They go together."
What can we do to address these issues? One inevitable byproduct of the oncoming millennial change is that there are innumerable lists and rankings of the most significant events and people of the past century and, indeed, the past 1000 years. Time magazine recently published a list of the 100 worst ideas of the century. This list included some truly bad ideas; ideas like prohibition, leisure suits, Astroturf, Hair club for men, sailing the Exxon Valdez into Prince William Sound, Geraldo’s Opening of Capone’s vault, psychic hotlines, thong underwear for men, Michael Jackson’s marriage to Lisa Presley, watches that beep, Rocky 5, and Milli Vanilli’s Grammy award. It might be fun, and possibly cathartic, for us to generate a list of the 100 worst ideas in transition or the education of students with disabilities, and thus identify the things that we want to leave behind in the 20th Century. However, for the sake of remaining positive, and to avoid taking the risk that something I am responsible for would end up on said list, I want to talk instead about the things that that we do want to take with us across that bridge into the 21st Century and the new millennium that allow us to better enable people to live enviable lives. The Utne Reader published a recent article titled "The 20th Century: Is Anything Worth Saving?" in which that magazine’s editors identified a list of things that emerged in this past century that are worth taking into the 21st Century. Some items on this list have had significant impact on our day-to-day lives. Antibiotics, which became widely used in the 1940s, have saved literally millions of lives. Paperback books were a risky venture in 1935, but by the 1950s had created a revolution that put books in the hands of more people than ever before. At the turn of the Century, no country on earth offered women the right to vote and we know that for many people of color the polling places were, for all practical purposes, off limit until the Voting Rights Act of 1965, so we mustn’t take for granted the importance of universal suffrage in the past century. Overseas air travel and, indeed, the proliferation of air travel in general, has transformed our society and broadened our economic and cultural opportunities. Other items listed by the Utne Reader are, perhaps, less momentous, but nonetheless worthy of taking with us into the next millennium, among these Dr. Seuss, the frisbee, the zipper, and last, though surely not least, sticky notes.
Similarly, there may be value to asking ourselves what are the "good ideas in transition services from this century that we need to be sure to take with us into the next century"? Certainly Andy’s suggestions fit this bill, and, for the remainder of the time I have with you this morning, I want to both expand on one of his suggestions, that of the importance of student involvement, and also to look more broadly at this question of what it is that we take with us.
In the paper Andy published in Exceptional Children that was based on his Quality of Life keynote at the transition project directors meeting, he suggested that although the statutory language in the 1992 amendments to IDEA never used the term "quality of life," the emphasis on student preferences and interests suggested that it was one outcome implied by the mandate. He then suggested that the next logical step in defining and evaluating the utility of transition services was to use "quality of life" as a conceptual framework for structuring and examining transition outcomes..
Unfortunately, in the subsequent years there has not been an overwhelming surge of efforts to make transition programs accountable from a quality-of-life perspective. In one of only a handful of published articles attempting to examine the quality of life of young people with disabilities as a direct function of their transition experience, Laird Heal and Frank Rusch noted that the lack of data on variables to assess outcomes like lifestyle satisfaction or subjective well-being make it almost impossible to evaluate the impact of transition services on student quality of life. While efforts to promote quality in business and in adult services for people with disabilities are increasingly focusing on personal outcomes-based indicators, those of us in education and transition remain largely stuck on paperwork and process indicators. As I noted at the DCDT Midwest Regional conference last October, even when we have focused on outcomes, they are limited in their scope… mainly job placement and post-secondary education enrollment. I agree that getting one's first job is an important first step to an enhanced quality of life. However, staying in that entry-level job year-after-year leads only to poverty and increased dependency on overburdened support systems. Too many students don't progress from that first job to the second, more responsible and higher paying job. As Andy noted, it is inaccurate to accept a prima facie assumption that getting a job will inevitably result in a satisfying, high quality adult life and it is unacceptable for us to focus solely on single outcomes and to ignore the bigger picture of the quality of the lives led by students who have received our services.
How should we be evaluating transition outcomes? Let me provide some examples from evaluation and accreditation efforts in adult services. The Council on Quality and Leadership in Supports for People with Disabilities, or just "The Council" conducts accreditation reviews for agencies serving people with mental retardation. For much of its 20 year history, this accreditation process focused on how service providers did their job… were they in compliance with organizational processes that were intended to ensure quality services. This was much like ensuring compliance with the paperwork standard that every adolescent receiving special education has an existing transition plan, and the results were much the same. That is, organizations were in compliance with paperwork standards, but the quality of the lives of people receiving those services didn't seem to change.
In 1990, The Council opted to change its focus from compliance with organizational processes to examining personal outcomes in the lives of people who are served. Measuring personal outcomes has all the well documented pitfalls and difficulties that measuring quality of life has been plagued by… but The Council believed, as do I, that if we are to ensure quality in services to people with disabilities, we must include a focus on those outcomes into our evaluation and accountability mechanisms. Personal outcomes are tricky to measure because we have to discover how the person defines the outcome for him or herself. The Councils' standards for accreditation state that there is no single definition of any outcome that applies to all people, that it is unlikely that any two people will define an outcome in the same manner, and that people define their own outcomes based on their own experiences, perspectives and individual preferences.
Some of the "indicators" used by The Council to measure quality in service delivery and to accredit high quality programs include the following:
People choose personal goals.
People choose where and with whom they live.
People are satisfied with their services.
People choose their daily routine.
People participate in the life of the community.
People exercise rights.
I know of very few, if any, school or transition programs that evaluate their services based on the impact of those services on personal outcomes in the lives of students with disabilities. Yet, I suggest that until we do so, we cannot effectively evaluate the impact of our services on the lives of students with disabilities and we continue to reduce the potential impact that the transition movement can and should have on the lives of students with disabilities, not to mention their families and society.
How do we achieve the outcome that students leave school to live high quality lives.. even enviable lives? Fortunately, one of the things we can take with us into the next century is a national disability policy structure that will provide a solid foundation to achieve this objective. Robert Silverstein, director of the Center for the Study and Advancement of Disability Policy at George Washington University and formerly the lead disability policy analyst for the United States Senate, recently conducted a comprehensive review of this disability policy in which he examined all the major disability-related policy initiatives of the last three decades, including the Individuals with Disabilities Education Act, the American’s with Disabilities Act, Social Security and Fair Housing protections, the Vocational Rehabilitation Act, and so forth. Silverstein’s analysis encapsulates this "emerging disability policy" into four guiding principles that cut across all such policy and legislation and which, in turn, guide all efforts impacting people with disabilities in our nation, including education. These principles are that:
We see this policy reflected clearly in IDEA, with its emphasis on individualization, person-centered planning, independence, productivity, integration and inclusion. Over the last decade, due largely to OSEPs self-determination initiative in the early 1990s, there has been increased emphasis on the fourth principal, that policy and practice should empower people with disabilities, promote self-determination, and provide opportunity for meaningful choices and full participation in the community. Unfortunately, from my vantage point, we are quick to talk-the-talk and slow to walk-the-walk in this area. I know from discussions with leaders at OSEP during the time period in which the language pertaining to the transition mandates was written, folks like Mike Ward and Bill Halloran, that the intent of the "student involvement language" (that is, that transition services must be based, at least in part, on student interests and preferences) was that students would have the opportunity and be provided the supports that enable them to have a meaningful voice in their transition program planning. This would, in turn, result in greater empowerment, enhanced self-determination and, presumably, greater community participation, all consistent with the guiding principals of disability policy described by Silverstein and all which would contribute to an enhanced quality of life. Fast forward to today, however, and what we find in an overwhelming number of school districts is that the focus on student involvement mandate has been implemented as a process requirement in which the key "outcome" is that the district can prove, usually in the form of a letter to the student and his or her family, that students were adequately notified that they have the right to attend their IEP meeting. Is there really any doubt that the more recent "age of majority" language in IDEA, which should be a catalyst for schools to begin to prepare students with disabilities to become more effective problem solvers and decision-makers at earlier ages, will, in too many cases, simply be just another piece of paper in the folder to prove that students and families were notified of their rights?
Accountability is an important issue in the education of all students and I, as much as anyone else, want schools to provide an excellent education for all students and to be accountable for enabling students to achieve high standards. One of the purposes of including students with disabilities in the standards-based school reform effort is to ensure that they are not excluded from the systems put in place to ensure such accountability. I, like everyone here, want teachers and other educational professionals to have high expectations and set challenging goals for students with disabilities. Diane Ryndak, in a text she co-authored with Sandy Alper, provided a compelling example of the impact of stereotypes about disability on teachers’ expectations for learning. She describes a student, named Maureen, labeled as having moderate mental retardation who had received her education from the age of 5 to 15 in self-contained classrooms for students with mental retardation. At the end of her final year in a segregated setting, the interdisciplinary team planning her education described Maureen with functional levels consistent with moderate mental retardation. Her IEP objectives from that year included improving phonics and comprehension skills to the second grade level, reading and writing dollar amounts, and solving three and four digit addition and subtraction problems. When she entered an inclusive seventh grade class, her social behaviors improved almost immediately. Within the first year, Maureen was completing age-appropriate work with some adaptation, including excelling on age-appropriate math tasks involving the Pythagorean Theorem and simple algebra. Maureen was not simply "mislabeled", since she continued to need accommodations and supports for a wide array of academic and other outcomes. When Maureen graduated from high school with her nondisabled peers five years later, she and her family made plans for her to be included in a college setting and live in the dormitory.
Maureen’s story illustrates the potentially devastating consequences of being excluded from the general curriculum. The expectations of teachers and others are too easily influenced by disability labels and educational placements. Both the inclusion movement of the last decade and the standards movement currently sweeping the U.S. address, fundamentally, the issues of exclusion and low expectations. However, I suggest that until we also put in place a structure that holds schools accountable for quality-related outcomes, we will not substantively change the life circumstances of students with disabilities. I concur with Andy that we need to catch a wave in the general education reform movement and to align transition within this powerful force. In fact, as I will describe later on, the learning and performance standards that exist in many states contain a wide array of learning goals and objectives that focus instructional efforts on on self-determination related outcomes. On the other hand, I am equally concerned that the tidal wave of general school reform will toss many students out of that boat, and, as David Johnson articulated yesterday, will have the unintended consequences of narrowing the curriculum and further isolating and segregating students with disabilities. I am concerned that we not capitulate to the tyranny of the general curriculum when that curriculum does not provide instructional opportunities for all students, not just the fortunate top forty percent, to achieve a higher quality of life. It is important that IDEA ensures access to the general curriculum, but we must be certain that the curriculum itself is appropriate.
At the heart of the school reform debate is a simple question that has many complex answers. That question is "What is the purpose of education?" How we answer that question influences, in fact basically prescribes, what we as educators and educational systems do to and for students and families. The prevailing answer to that question around the country is embodied in what Harvard psychologist Howard Gardener refers to as the "uniform schooling" approach, which proposes that there are a basic set of competencies and a core body of knowledge that everyone in our society should master. The purpose of education, therefore, is to ensure that the greatest number of students achieve these basic competencies and acquire this core knowledge as efficiently as possible. Consequently, schools should be organized in such a manner that a standard curriculum is in place, with standardized methods of assessment ensuring attainment of these standards, and students, teachers, administrators and school districts judged according to how efficiently and effectively they achieve these standards.
Of course, the "uniform schooling" approach is not the only perspective within which one can address issues pertaining to the purpose of education. In some ways, in fact, this perspective is seemingly at odds with what has been the dominant approach to the education of students with disabilities, an approach largely sculpted by and reflected within our nation’s disability policy, as discussed earlier. Gardener describes the dominant approach in the education of students with disabilities as "individual-centered schooling" where focus is on individualized planning based on unique needs, leading to an educational program designed to maximize independence and self-sufficiency. The purpose of education in this approach is better captured by Yale psychologist Seymour Sarason’s suggestion that at least one purpose of education is to "produce responsible, self-sufficient citizens who possess the self-esteem, initiative, skills and wisdom to continue individual growth and pursue knowledge." Aligning with and integrating into the general school reform movement does not mean that we sit idly by and accept the doctrine of the uniform schooling approach, independent of the consequences to students with disabilities, nor does advocating an individual-centered schooling approach imply that we dismiss as irrelevant the impact of high standards for achievement on teacher expectations and student achievement, as illustrated by Maureen’s story. In addition to standards-driven accountability, we need to advocate for and insist on personal-outcomes based accountability systems for all students, with and without disabilities.
If we are successful at moving in that direction, what can schools do to ensure they will succeed if they are held accountable for personal outcomes related to the quality of the lives that students lead? Obviously, much about what we currently do relates to this. Andy’s six areas of focus will, in fact, enable schools to impact personal outcomes for students. There are many people in the room today who can more effectively speak about most of those areas, so let me focus on only one area, enabling students to more effectively assume responsibility for their own learning.
Again, due in large part to the OSEP funded self-determination grants and to the efforts of many people in this room today, there are many positive trends in the field with relation to promoting active student involvement. In addition to numerous programs and curricular materials to promote self-determination, there are a number of programs designed to actively involve students in their transition planning process. Indeed, what seemed like a radical idea when forwarded by Jim Martin in 1992, that is, having the student chair his or her transition planning meeting, has become almost institutionalized as best practice in our field today. In fact, there seems to be wide acceptance in the field about the importance of self-determination to the lives of students. My colleagues, Marty Agran and Carolyn Hughes, and I recently conducted a national survey to determine whether teachers wording with students with cognitive disabilities identified self-determination as an important instructional area and to examine the degree to which they provided instruction that promoted self-determination. The results speak to the good-news, bad-news situation that currently exists. On the good-news side of the coin, 60% of 1,200 teachers working with secondary age students who responded said they were familiar with the self-determination construct. They also rated instruction in the component elements of self-determination, instruction in areas like choice making, goal setting, decision-making and self-advocacy, as important, with between 90% and 98% of respondents indicating that a given instructional domain was either "moderately important" or "very important" for their students. Third, teachers indicated that they believed that promoting self-determination would be "very helpful" to prepare their students for success in postschool life and "somewhat helpful" to ensure their success in school.
On the other side of the coin, however, questions in our survey examining the degree to which teachers moved beyond stating their belief in the importance of promoting self-determination to implementing strategies to do so yielded less positive findings. Despite the fact that a high percentage of respondents indicated that instruction in component elements of self-determination was very important, only 22% indicated that all their students had IEP goals in this area, while 31% indicated that none of their students had such goals. In addition, one-third of respondents reported that they did not involve students in educational planning at all. In a separate study I conducted with a colleague at The Arc, we examined more than 800 goals and objectives written into the individualized transition plans of students with mental retardation. Much of our research at The Arc has pointed to the fact that many people with mental retardation are not self-determined but, that if provided adequate opportunities to acquire greater skills in these areas, can become more self-determined. Thus we were interested in the degree to which students’ transition goals indicated they were receiving instruction in areas related to promoting self-determination. While we hypothesized that such goals might not be represented in these transition plans to the degree we believed they should be, I must confess that we were still surprised by our findings that not a single transition goal out of those 800 goals indicated a focus on instruction to promote student self-determination.
There are a number of reasons this might be so, and our national survey provided evidence for one such reason… the expectation on the part of teachers that students with mental retardation would not or could not benefit from such instruction. This was the most frequently selected reason that teachers in our survey identified for not providing instruction in this area. When we examined these findings based on the type and level of students’ disability, we found that teachers who worked with students with more significant disabilities disproportionately believed that their students would not benefit from instruction in self-determination. In addition, teachers who worked with students with more severe disabilities rated instruction in the self-determination domain areas as less important than did teachers of students with mild disabilities across all domain areas except choice-making.
These findings are not surprising considering that people with the most significant intellectual disabilities may be less likely to learn complex skills like decision making or problem solving. Also, since the professional literature in severe disabilities has focused largely, if not exclusively, on the importance of supporting choice-making for this population other component elements have received limited attention.
We were, however, concerned with the fact that severity of disability appeared to influence teachers’ perceptions of the relative benefit of instruction in self-determination, and I suggest that this is one area in which we need to be vigilant. Self-determination is, fundamentally, about exerting control over one's life and one's destiny. People who are self-determined are causal agents in their lives in that they make things happen to and for them. The perception that students with more significant disabilities could not benefit from instruction may be tied to an interpretation of self-determination that places undue emphasis on performing behaviors independently, without appropriate supports. While it is undoubtedly true that the severity of one's cognitive disability will impact the number and complexity of skills one can acquire and that there are individuals with significant disabilities who will not be able to make independent decisions or solve complex problems, this does not mitigate the relative importance of providing instructional experiences to enable these students to become more self-determined.
So, while there are some promising practices in promoting self-determination and while it appears that teachers, by and large, concur that self-determination is an important instructional area, this does not appear, at the moment, to be translating to instructional opportunities for many students. While our research has focused on students with cognitive disabilities, I suspect the status is much the same for students within other disability categories. Likewise, I suspect that while there are pockets around the country where students are actively involved in transition planning, supported by some of the model programs developed through OSEP grants, I also suspect that there are wide areas in which students are not a part of the process. As troubling as it may be that many students have no meaningful role in transition planning, I, along with others who have worked in this area, am equally disturbed by the tendency on the part of schools to implement some program to have students chair or participate in their transition planning meeting and then indicate they are "doing self-determination". Active student involvement in the transition planning meeting is a great first step to an overall effort to promote self-determination, but it is just that, a first step. The entomological roots of the word "involve" come from the latin word involare, which meant to literally be enwrapped or engrossed in something. In the old English usage of the word, involve meant to wrap around, as in a vine wrapped around, or involved with, lamp post. If we are to achieve the outcome that students with disabilities take responsibility for their own learning, we must view efforts for student involvement as more than attending a planning meeting, but instead to get students enwrapped in their educational program. To do so, we must enable students to become self-regulated learners, teach them to become effective problem solvers, and provide them with opportunities to make meaningful choices and decisions about their lives and their futures. We also must do this before high school. I have come to believe that there is a significant gap in instructional activities around self-determination in the middle school and junior high years, and that we need to be much more attentive to instruction in self-determination related domains during that time span if we are to succeed.
Finally, let me make one more recommendation about promoting student involvement and active student regulation of learning. When we think about life in the 21st Century, we tend to think of technological advancements. Microwave ovens that read the universal product code (the bars on every package) to obtain heating instructions or automated highways, where the road and the automobile do the driving. The future is full of the promise of technology and computer networks. Yet, without downplaying the potential for technological advances to improve the quality of life of people with disabilities it is another type of network that we need to focus on to enable students to become more self-determined and to achieve a higher quality of life. In a recent installment of the comic "Over the Hedge", R.J., described on the strip’s web page as a mischievous raccoon, approaches his best-friend Verne, a turtle prone to introspection and philosophical ramblings and asks "What’s up". Verne says that what is up is his new web phone, and notes that he can call the office, check stocks, and e-mail his friends all with one portable unit. R.J. glances quizzically at him and asks "what if you have no job, no stocks and no friends." Verne pauses for a moment and then responds that "there are still a few bugs to be worked out". Well, the truth is that those of us in transition must admit that there are still a few bugs to be worked out in how we do what we do, because one of the least enviable aspects of living with a disability in our society is the lack of friendships and the stark loneliness that pervades the lives of many Americans with disabilities. Living an enviable life is not strictly about monetary resources or good jobs. It is, perhaps, mainly about having relationships and friendships. An anonymous person noted that "friends in your life are like pillars on your porch. Sometimes they hold you up, and sometimes they lean on you. Sometimes it’s just enough to know they’re standing by." We mustn’t ignore the importance of friendships and social networks in all aspects of students’ lives, but also in promoting self-determination.
In Oklahoma and Texas, where I have lived most of my life, there is a saying that "any jackass can kick down a barn door, but it takes a carpenter to build one." Lest I be accused of simply being the proverbial donkey who does nothing but criticizes and has nothing to contribute to the constructive conversation, let me close with what I see as the action items in the next decade and beyond with relation to self-determination. This list assumes, of course, that it is important to continue to conduct research to better understand the development of self-determination and the impact of self-determination on the lives of students with disabilities, and to continue to develop and implement methods, materials and strategies to support instruction in this area. With that as a given, let me provide a few suggestions for progress.
First, we are fortunate to have a strong national disability policy, one pillar of which is empowerment and self-determination. We need to continue to interpret and revise laws like IDEA in the context of these pillars and work to remove the ambivalence that may still exist in law and in practice. Within IDEA, we have the transition mandates in which student involvement is a key component.
In addition, the relatively new age of majority language provides yet another hook upon which to hang our hat for promoting self-determination. We need to work nationally and locally to ensure that these mandates are more than just paperwork standards and that their implementation is consistent with the spirit and not just the letter of the law.
Third, I echo Andy’s call to work to move transition in alignment with general education while at the same time ensuring that the state and national school reform and standards movement does not further isolate adolescents with disabilities. If one examines many of the state standards and performance goals, it is evident that for all students, with and without disabilities, learning the component elements of self-determination, like goal-setting, decision-making and problem solving skills, is a key aspect of the general curriculum. We can and should use these standards to insist that students with disabilities receive instruction in self-determination and, simultaneously, gain access to the general curriculum.
Fourth, we need to work diligently to insure that the educational accountability system attends not just to normative standards, but also to personal outcomes. We begin that process by ensuring that our efforts, research and practice, and the efforts of the states and districts in which we work focus on personal outcomes and issues of quality of life, instead of focusing only on single outcomes that may or may not contribute to a higher quality of life.
Fifth, we need to do a better job of providing supports and accommodations, rather than providing services or running programs. When we begin to think of what we do in terms of supports instead of programs, we will be better positioned to consider personal outcomes instead of just program outcomes.
Finally, we need to become better community builders, supporting students to become members of their communities and enabling them to build and maintain friendships and relationships within those communities, including the school community. Perhaps our call to action is best summarized by the by the words of the former president of Notre Dame University, Father Theodore Hesburgh, who said "You have to have a vision. It’s got to be a vision you can articulate clearly and forcefully on every occasion. You can’t blow an uncertain trumpet." We need to blow a certain trumpet that unequivocally sounds our commitment to enabling young people to live self-determined, high quality lives by providing services that enable them to cross their bridge to an exciting, interesting and, yes, perhaps even enviable , future.