On Asking Why Not Prepared Keynote Remarks of Bob Williams1 At the DC Office on Disability Rights Possibilities: Leadership, Collaboration, and Change for Disability Rights in the District of Columbia October 7, 2008 Good afternoon and thank you very much. It is a pleasure and a privilege to address the first of what will be many I believe successful Annual Meetings of the DC Office of Disability Rights. I recently marked a seminal anniversary. 30 years ago in August 1978, I came to DC to earn my Bachelors from George Washington University the first in my family to do so. In recent years, my wife and I had to move out of the area for a while. Therefore, it was quite the opportunity when Judy called me 18 months to ask that I join the extremely committed and exceptional team she has created at DDS. To both leap at the chance of doing so and the chance to move back home to the District of Columbia. A city like the Nation, which can be summed up in one word. Possibilities. And since it is such an important part of the theme of today’s conference I want to spend a couple of minutes dissecting that word possibilities. Because to me there is a yin and a yang to them. Possibilities typically come in one of two vastly different forms. The Probable. And the Improbable. Of the two, it’s typically the latter -- those things that are least expected. Frequently even unfathomable to the great majority of people that often have the greatest impacts on all of us. Good, bad or ugly individually. And on our families, community, country and world as well as the times we live in. Consider the following for example. Except for Al Gore and one or two Nobel laureates who would have thought it plausible in the 19 80’s that by 2008 the polar ice caps would be melting at the rates that the scientific community now reports they are. Who would have ever thought it plausible that an African American and a Vietnam Prisoner of War who was almost left for dead a woman Governor from Alaska, a former First Lady and a guy name Joe Biden? would redefine Presidential politics. Not just this year but I believe in every election to come. What pulp fiction writer could have possibly spun that plot and then got it published. And tragically, who could have predicted 9/11? Who could have possibly predicted 9/11? Well as it turns out, we know there was a few that did exactly that. And there were others who while they could not connect all of the dots nonetheless did everything they could to warn their superiors that something others dismissed as improbable or 1 Bob Williams is the Special Assistant to the Director of DC Department on Disability Services and formerly served as the Commissioner of the Administration on Developmental Disabilities and a top advisor to HHS Secretary Donna Shalala during the Clinton Administration. completely unthinkable was about to happen. People after all do not learn how to fly a plane without learning to land it without having a rather compelling and extremely disturbing reason for doing so. A few who as I said recognized that fact and acted to warn the rest of us. But if you red its report you know that the 9 11 Commission’s found that at the root what led to the events of that day was a collective failure in imagination. The failure to imagine that our worst nightmares could come true and then to act on it. The failure to imagine and take a giant leap outside of our comfort zone to. Number 1: Recognize that the impossible and implausible can and often does becomes the new reality. And Number 2 to integrate such new possibilities into our thinking and to be able to respond and shape them rather to be shaped utterly by them. We have seen what happens when there has been a failure in imagination and leadership in other venues as well. The space shuttle disasters. Katrina. The war. The recent economic turmoil we are experiencing. To name but a few obvious examples. But just as a failure in imagination to see beyond the obvious and the status quo is frequently our greatest flaw the exact opposite has been true through out our history as well. Paraphrasing George Bernard Shaw. Bobby Kennedy use to frequently say that moral leadership requires us not to see things as they are throw up our hands and simply ask why. True moral leadership in our country he would say requires us to dream things that never were and ask why not. And by asking why not he did not mean just flippantly posing the question and then walking away. But rather asking it and then vigorously acting to answer it. In the affirmative. Certainly, we see this in the leadership of great Americans. Harriet Tubman did not return south hundreds of times to lead others to freedom after escaping slavery herself because she was impervious to the possibilities and probabilities confronting her on every trip. She knew with certainty that she would be tortured and lynched if caught. But she also knew the improbabilities of her own freedom. And because she escaped, Tubman asked herself the question. If I am free, why not free others. Whether it was Lincoln fighting a civil war to end slavery and give birth to a new nation. Franklin Roosevelt lifting up the American people from the depths of the Great Depression. Rosa Parks sitting down on a bus in Montgomery to claim her birth right and that of all of us to be afforded equality dignity and or Harold Betty and Joy Evans challenging the unjustified institutionalization of over a thousand District of Columbia residents in Forest Haven. They and countless others like them knew well the odds of succeeding were stacked against them. But they likewise knew that simply accepting an insidious status quo was no longer an option. Fortunately, 50 years ago my parents were guided by the same mind set and imagination. When I was born in 19 57 many professionals and other nay Sayers told my parents institutionalize me at a place called the Mans field State Training School in the small Connecticut town which was the next one over from the one we lived in. A place as it turned out I first saw the insides of one summer when I was in college volunteering for the Connecticut ARC and helping to gather evidence for a law suit that eventually closed it down. And as I walked the back wards of first Mansfield and then as a young Court monitor Forest Haven peering into the eyes of people lying on silver floor mats and caged steel white cribs I saw a mirrored image of what my life might have been. When I was young, my parents never asked why they were being advised to institutionalize me. Instead, their attitude was why not raising Bobby at home along with my four older brothers and sisters. Fortunate for me, we had a large extended family allowed them to do just that. Nine years later when the tutor the town we lived in sent to my home refused to even try to teach me to read or write my parents like many other parents of children with disabilities of that day moved to a Connecticut town about 60 miles away where I could get educated. And it not that it all went swimmingly from that point on, that decidedly was not the case. I went to school literally in a Sunday school room at a church for a couple of years and then went to school in the next town over because there was no accessible school in Newington. But I and a half other dozen other of my class mates did learn the three R’s and the one T. Reading Writing Arithmetic and Typing. I learned something else during those formative years as well. I learned that my parents and really my entire family. My brothers and sisters grandfather aunts and uncles held out high expectations for me. Looking back, they were not just improbable but quite outlandish expectations. They expected and imbued in me the strong expectation that I would go to college that I would work pursue a career. In short, they believed that I could and would have the kind of life that all parents want their children to have. Not because any of us were oblivious to my disability those things that I could not do. Or, the work it would take on all of our parts to realize those goals. But because we tended to focus more on my strengths and accomplishments. We focus on my potential and setting next steps and long-term goals that help me to develop and achieve that potential. That basic framework has served me well over the years. So in my view we would be equally well served as a city by using much the same tact with respect to advancing the purposes and aims of the Americans with Disabilities Act. To "assure equality of opportunity full participation, independent living and economic self- sufficiency". by eliminating discrimination, segregation and stereotyping on the basis of disability. Advancing these basic aims requires us as a city to take three steps. First to eliminate disability discrimination we must be ever vigilance to what it looks feels smells sounds and yes sometime even tastes like in all it varied and insidious forms. Similarly just as ageism racism sexism homo phobia and other fear based biases have mutated and in some ways grown more resistant over time so has and so will disability based bias and discrimination. And, we must be aware and ready to confront this as it happen. The second and more difficult thing I believe we must do goes back to where I began this rant of mine. If we are truly serious about assuring equality of opportunity full participation independent living and economic self sufficiency for all children adults and older persons with disabilities here in the District of Columbia we must let our imagination lead us. Not in any whimsical, unrealistic way. But rather in a no nonsense brass tacks sort of way. We must use our collective insights to first size up how far we have come as a city in assuring and advancing equal opportunity for those with disabilities. And clearly critical progress has been made in the three decades that I have called DC my home. Today we live in one of the most accessible cities in the world. We have one of the most readily accessible public transit systems in the world. Similarly today close to two thirds of all District residents use the Internet which I believe is the greatest equalizer in our life times and indeed any other. The Internet has the great potential to liberate and transform the everyday lives and futures of many marginalized groups and individuals. And I think this can and must be made to be particularly true with regard to people with significant disabilities our families and those that work for and with us. Furthermore in the last generation DC has swung opened the doors of education to students with disabilities and it has closed the doors forever more the doors of Forest Haven. And as Mayor Fenty recently reported more people with developmental disabilities are now receiving the Medicaid waiver they need to live with their families or homes and apartments of their own choice than there are those living in more restrictive ICFMR facilities. A trend that will intensify over the next couple of years as DDS implements the first phase of the multi million dollar Money Follows the Person demonstration grant from the federal Centers on Medicare and Medicaid Services. A grant that will ultimately enable many institutionalized people with the full range of significant disabilities to access the services supports and opportunities they need to move back into and make a life of their own choosing and direction in this city we love. So tremendous progress has been and continues to be made and a strong foundation that is firm and ready to be built upon has been squarely laid. However, we must also assess not just how much further we need to go. Far more critically, we must as a community come to a clear consensus on where it is that we want to be going. On how we want to get there. On when we want to arrive. And on what road posts and benchmarks we want to use to measure our progress both in time and most importantly real results for people in reaching or at least advancing toward this goal. This requires us to be bold in imagining and envisioning how over the next 5 to 10 years the District can and must more fully become a city of Universal Access and Opportunity for all of us that live here. It also in turn requires us to take a third step. Specifically it requires us as I just alluded to identify both the barriers we will encounter along our way and the benchmarks that we will need to set and ultimately exceed over the coming decade. So I want to spend the remaining time I have with you briefly outlining what I believe some of those major barriers and benchmarks are for ameliorating and eventually eliminating them. And for better or worse these are my views and my views alone and do not necessarily reflect those of DDS or any other person or entity that has ever had the dubious distinction of knowing me. That said however the three areas I will touch on next certainly would come to no surprise to anyone here. In fact in year 2000 my boss at the time Health and Human Services Secretary Donna Shalala and then Surgeon General David Satcher felt so strongly that all three issues are so integral to not only the health and well being of children and adults with disabilities but that of our country that they addressed them in Healthy People 2010 the public health blueprint for our nation. The first of these Healthy People objectives I will discuss relates to the need for inclusive meaningful education. The objective is to: “Increase the proportion of children and youth with disabilities who spend at least 80 percent of their time in regular education.” End quote. The District as we know faces a steep achievement curve in meeting and exceeding this objective. According to the U.S. Department of Education as of 2000, fully three fourths of special education students in DC spent most of their time in either separate classes or separate schools altogether. Conversely only 4 percent ---- let me say that again only ---- only 4 point zero percent of such students spent 80 percent or more of their time attending regular classes with their non disabled peers. Nationally the comparable figure is about 40 percent. Educational outcomes for DC students with disabilities are equally dismal. Only about one in five special education student’s graduates from school with a diploma in DC compared with nearly half of such students nationwide. In addition, fully 60 percent of DC special ed. students drop out of school. As a city, we did reach these levels in a single year. Nor in a single decade. But we owe it to the students of today the students of tomorrow and yes those who lost out so much in the past to set out a clear vision of what a superior public education can and must look like for all students in the District of Columbia. And set about achieving that vision. Student by student, school-by-school, benchmark by benchmark. We must take much the same tact with respect to a second Healthy People 2010 objective which calls for the reduction in the institutionalization and other congregate care placement of children and adults with disabilities. As I have already noted, significance progress has been and continues to be made in this critical area. Over the next three years with support from the Money Follows the Person grant DDS will support up to 400 persons now living in ICFMR facilities to move in to homes and apartments of their own choice. Plans also call for the MFP initiative to be expanded to benefit individuals who are needlessly institutionalized in nursing homes, psychiatric facilities and other congregate care settings in the District. This in my view is crucial. However, we also must go one-step further. Nationally and here in the District the vast majority of children adults and elderly Americans with significant disabilities who require on going supports live not in institutions but in the community. Many receive all the services and supports they need from their families from friends and/or Medicaid and similar programs. Nationally we know however that a little more than 25 percent of those individuals requiring the greatest assistance do not get all of the help they need with such basic needs as eating dressing using the bathroom managing their day or their money. Those that live alone or with aging parents are particularly at risk of having many of their needs go unmet. And often can face far greater risk of injury illness social isolation segregation depression institutionalization and in some cases even death as a result. Therefore, in my view our approach to reducing unjustified institutionalization as the Supreme Court has described it must be two fold. We must of course seek to remedy it when it occurs. However, we also must place at least equal emphasis on better tracking and meeting the unmet needs of those with significant disabilities already living amongst us. Confronting these issues in this economy will not be easy but ignoring them would create and perpetuate dire consequences. Moreover, I am glad to see ODR taking these challenges on through its Olmstead Planning and implementation activities. The third Healthy People 2010 objective I want to commend to you as an important benchmark for us as a city to set is that as a long term benchmark is that of eliminating employment rate disparities between working aged adults with and without disabilities. here again the current state of our economy and the fact that the employment rate among people with significant disabilities has held at about 30 to 45 percent at best over the course of all of our adult life times makes realizing this goal seem unrealistic and fanciful. But let me suggest that one reason why we have abjectly failed to significantly increase the employment rate of people with significant disabilities is that we have abjectly failed to recognize. Let alone enhance the employment and economic prospects of the approximate one third of such Americans who do work. About 95 percent of people with significant disabilities who work do not receive SSDI or SSI nor has Medicare or Medicaid coverage. However, most nonetheless have household incomes below or near the federal poverty level. Many of those that are employed even on a full time basis are uninsured. They are truly the forgotten workers. And especially now if we are entering a recession I respectfully submit we must focus some long over due attention on helping these workers to retain their jobs and receive the support they need and in my view have earned to keep them from falling into the abyss that they have been peering into for far too long. Finally let me propose a fourth objective that is not included in Healthy People 2010. But that is consistent with both efforts in this country and internationally to substantially reduce the grip poverty has and is steadily gaining over the everyday lives and futures of millions of people families homes and communities nations and economies world wide. And the objective I want to propose which many will no doubt see as wildly unrealistic and utopian is this. To cut disability based poverty in our city in half within ten years. Since time immemorial, poverty and disability have been more than mere synonyms of each other. They have been seen as immutable parts of a self- fulfilling prophesy. But the magnitude and pervasiveness of this problem I believe is crippling. Yes crippling the civil rights of people with disabilities and the effectiveness of the ADA. Disability poverty takes a heavy toll on families of children and adults with disabilities. it takes a heavy toll on working age and older people with disabilities. And, last but not least, it exacts a heavy toll on the mostly low wage, no fringe benefits workers who provide many of us with the personal assistance and support that we need to live our life to the fullest. Let me assert that when you add up the men, women and children with disabilities that fall into the three groups I’ve mentioned, you come would come up with a significant proportion of those are among the poor and the working poor in our country today. That’s why I so fervently believe as a city and a nation the time has come to reduce the effects and consequences of disability poverty rate by developing and expanding employment and career advancement strategies as well as home ownership and other asset development opportunities for all of these individuals and their families. Achieving as well as setting and tracking the benchmarks to achieve the types of broad and bold objectives I have just outlined will not occur over night. Achieving these aims to paraphrase my lifetime hero FDR will require that we be bold and persistent. Bold and persistent in our imagination, creativity, leadership and collaboration. And bold and persistent most of all in our commitment. No one District agency nor the entire DC government can take on issues like these alone. It will take a partnership of government, disability and aging community, business, education, religious, philanthropic and other civic leaders working together. Today’s conference will be I am certain a major launching pad for this endeavor. In addition, I hope in some small way what I have said here will contribute to its success. I want to thank you first in being so indulgent to my lunchtime rant. And for your continuing commitment to advancing the civil rights of all District residents. Please become my assistive technology and give Eve Hill and her staff, my boss Judy Heumann and yourself of course a big hand. Thank you very much.