Lex Frieden: Community-Based Services

National Press Club
Washington, District of Columbia (United States)
ID: 175365 - 03/05/2003 - 0:53 - $29.95

    Frieden, Lex, Chair (Nominee), National Council on Disability


Mr. Frieden spoke about community-based services for the disabled and his goals as the new chairman of the president's National Council on Disability. Following his remarks he answered questions from the audience.



Remarks by Lex Frieden, Chairperson

National Council on Disability

before the

National Press Club

Morning Newsmaker

March 5, 2003


MODERATOR: Good morning. Welcome to the National Press Club Morning Newsmaker program. My name is Rose Marshall. I'm a member of the Press Club Newsmaker Committee, and it is my pleasure to be your host today.


          Before we get started, I would like to go over a couple of ground rules. First, I need to be certain that everyone has signed in. And second, please turn off any cell phones or put them on "silent."


          Let me make a couple of announcements, too. We have a couple of events coming up. On March 7th, we have the deputy prime minister and minister of foreign affairs of the Czech Republic, Cyril Svoboda, who will discuss Czech-American relations in light of the Iraq crisis. And on March 14th, we have the leader of the Ulster Unionist Party of Northern Ireland, David Trimble, who will provide an update on the situation in Northern Ireland.


          Today, it is our pleasure to have Lex Frieden. Lex is President Bush's newly appointed disability advisor and chairperson of the National Council on Disability. Today Mr. Frieden is going to talk about community-based services for the disabled and the impact of health care reform. Welcome.


MR. FRIEDEN: Thank you.


MODERATOR: Thank you.


MR. FRIEDEN: I would like to begin by telling you a little about myself. I am a professor of rehabilitation at Baylor College of Medicine in Houston and also senior vice president at the Institute for Rehabilitation and Research, and I am chairperson of the National Council on Disability. I also happen to be president of an organization called Rehabilitation International, which represents organizations in more than 90 countries around the world working on matters related to disability and rehabilitation.


          I am very concerned about disability issues because I myself am a person with a disability. I broke my neck in a car accident when I was 18 years old, a freshman in college at Oklahoma State University. I did have at the time the opportunity to have very good physical rehabilitation at the Texas Institute for Rehabilitation and Research in Houston, which is now TIRR, the Institute for Rehabilitation and Research, and a place where I work.


          During my rehabilitation, the physicians, the therapists, and the counselors all said to me (and this was in 1967), "You will be able to do whatever you can imagine doing as long as you can imagine doing it from a wheelchair." At the time, that did not sound threatening to me because, I was a student of the sixties and people were doing a lot of things that people before that decade did not expect them to be doing. In fact, we were racing to the moon. And the thought occurred to me at some point during my rehabilitation, the early years, that if astronauts stuck inside a space capsule with little to do but pass time while they floated around the earth could be heroes and accomplish as much as they did, then certainly a person who is in a wheelchair with full access to the environment could accomplish a great deal. And that left me with a great deal of hope.


          Shortly after, however, when I finished my early rehabilitation and went back to my home in Oklahoma, I applied to go to a major university in that state, Oral Roberts University. I received a letter denying my admission on the basis of my disability. I was concerned about that. I was 18 years old, and I had tried to do my best as a youngster and expected to have the opportunity to have an education, particularly given what the doctors, the therapists, and the counselors had told me during my rehabilitation experience.


          I thought there must have been a mistake. So I called the dean of admissions at the university, and he told me in fact there had been no mistake, that I did indicate on my application that I used a wheelchair for mobility. And I said to him, I still don't understand what the problem is. I said, I had good grades in school. He said, yes, we understand that, we have seen your record. I said I made good grades on the qualifying exams. He said, yes, you were in the highest 5 percent in the nation in your scoring. I said, can it be that you are concerned that I won't be able to pay my tuition? I have a full scholarship. He said, I understand that you have a presidential scholarship. I said, are you telling me simply because I am using wheels for mobility I can't be a student on your campus? He said, yes, that is what I am telling you. That is our policy.


          Well, that was disconcerting to me. Actually, that left me with a lump in my throat. I couldn't tell my parents about that for several days. I couldn't talk to my friends about it. I felt like I had done something wrong because I had a disability.


          It took me a long time to recover from that. I did, however, apply to another school in Tulsa, the University of Tulsa, at which there were no-at the time-accessible facilities as far as I could tell. I met the dean of admissions on the tarmac outside the administration building. And the dean said to me, you know, we'd like for you to be student at our university. And I said, well, I would like to go to the university, but I can't see how I can possibly matriculate here as you don't have any accessible facilities. And he said, well, if you look over there, there is one building that will be finished by the time the fall semester starts. And if you will take a copy of this catalogue and choose the classes you would like to take, we will make sure that they are put in that building.


          That was a breakthrough to me. It was like salvation. Since then-during the time that I had the opportunity to consult with the Department of Labor and the Department of Justice and the Department of Education; in writing the regulations to section 503 and 504 of the Rehabilitation Act; and during the time that I had the opportunity to work with the National Council on Disability during the 1980s, preparing the groundwork for the Americans with Disabilities Act--that experience of first being turned down because of my disability and then being given opportunities to do things in a nontraditional way, in a problem-solving manner--seeing the breakthrough, seeing the hope, and recognizing the future--that experience has driven me to work as hard as I possibly can to find opportunities for people with disabilities in our society. Nobody should be left without hope.


          Unfortunately, today, as a result of some barriers in the environment, barriers in the economy, barriers in the way some people still think, there are people with disabilities who are traumatized by the reality that they have a disability. And many people in the public, unfortunately, are concerned about the likelihood that they, too, might have a disability. Let me share with you a particularly pertinent fact.


          In January 2011, 10,000 baby boomers will cross the threshold of retirement; they will become 65 years old. And every year thereafter, 10,000 baby boomers will cross that threshold every day, until, in the year 2020, there will be 80 million people over retirement age in the United States. Now what is significant about that from the standpoint of disability? The reality is-and I think most people know this intuitively-that the longer we live, the more likely we are to experience a disability. As a function of the natural process of aging, people lose sensation, they have hearing loss, vision loss, they have difficulty with mobility as a result of arthritis and many other conditions. They are likely to experience memory loss and other kinds of cognitive impairment simply as a result of the natural effect of aging. If you add to that the numbers of us who will be injured through acts of violence (and that number, unfortunately, is on the rise); the number of people who at birth and younger ages have disabilities resulting from developmental issues (and genetics won't solve every problem); the number of people who are injured in the course of their everyday lives and become disabled as a result of car accidents, sporting accidents, and other activities-these are the people who are threatened by disability. I say "threatened" because most people fear the prospect of disability. It is my contention that we shouldn't fear disability. Many of us have demonstrated that one can be happy, that one can be successful at life, that one can have achievements with a disability.


          The great breakthrough of the Americans with Disabilities Act has changed our environment dramatically. Before the Act was passed and signed by the former President Bush, many people with disabilities were turned down for jobs that they were well qualified to do. Today, fewer people face the prospect of being turned down simply because they have a disability. And yet, it continues to happen from time to time. The educational programs that we have in place today serve most people. And yet, people with disabilities are the poorest served among the population. So we have many, many challenges in front of us despite the ADA. And furthermore, we have challenges maintaining the integrity of the ADA in the face of constant, constant threats and constant appeals to revise the Act.


          We need to maintain the ADA. We need to maintain the integrity of the Americans with Disabilities Act. Not only do people with disabilities have the right to have an equal opportunity, but all of us in society depend on people with disabilities having the right to an equal opportunity. It is far better for society, far better for the public to have me working, traveling, spending money, integrated, and involved in our society, solving problems for all of us, than it is to have me institutionalized, not paying taxes, using the benefit of the public good, and, frankly, not being very successful and not being very productive.


          Right now, we have certain policies which I want to discuss very briefly that are preventing people with disabilities from being as active in the mainstream as they ought to be. First, we lack an infrastructure designed to support personal assistance services to people living in the community. Right now, according the Centers for Medicaid and Medicare, 73 percent of the money used on long-term care is being spent to support people in nursing homes as opposed to living in the community. It is my contention-and I believe the National Council on Disability shares this view-that this figure ought to be reduced. That most of the effort that we spend to provide assistance to people ought to be spent to provide assistance to them in the community, in their own homes, where they can be part of their families, where they can be part of their community, where they can be productive in society.


          This is not to say that living in a nursing home is a bad thing. Many people may choose to live in a facility where they can get assistance. But given the choice, what would you choose: to live in a nursing home or to live in your own home? My contention is that most of us would choose to live in our own home and have the assistance that we require provided to us in that setting. It is possible; we have demonstrations of this around the country now--there are more than 400 centers for independent living. These are not medium facilities, they are community-based programs that are helping to organize personal assistance services to people so they can stay in their own homes and be a part of their families and, if possible, go to work. If they are working, they are paying taxes. They are not receiving the benefit of those of us who do pay taxes. They are contributing.


          I think we have to continue to develop this infrastructure, and I think it will take the commitment of the whole society. If we do not do it before 2011, and the vast numbers of baby boomers are faced, through the natural effects of aging, with disabilities, we are going to be very frustrated by the lack of choices in the community. We won't go happily to the nursing home. There will be a grave crisis in this country because of the opportunities we missed to plan today to provide community-based programs to ensure services to people with disabilities in their own homes, in the community, so that they can stay as independent as possible throughout their lives, regardless of the natural impact of the aging process and regardless of other disabilities that they may experience.


          The second aspect that I want to call your attention to today is the dwindling supply of resources when it comes to rehabilitation of people with disabilities. I was fortunate in 1967 to have several choices in this country about where to go to get the very best rehabilitation. I could go to the Rehab Institute of Chicago, I could go to New York University, I could go to the University of Washington, I could go to Rancho Los Amigos in Los Angeles, I could go to Denver, Colorado, or I could go to TIRR in Houston. There were many fine facilities and institutions and programs designed to provide and support rehabilitation of people with the most severe disabilities and the most complex medical/social needs. Today, the opportunity for people to choose is quite limited, because the resources do not exist in the system to ensure that level of choice. Furthermore, the resources are now stretched to the point where the professionals who work in the facilities I just named and others have to struggle to ensure that people get the quality of service that we used to take for granted.


          This approach to health care has focused to some degree on prevention-that's good-and on minimizing the cost to taxpayers and to those of us as individuals who have to pay for health care--that's good, too. It has focused on improving efficiencies, and that's good. But at the same time, we have sacrificed a certain level of quality that I believe needs to be maintained. Therefore, I think we need to look at policy changes as we look at health care reform, as we look at reform of the Medicare and Medicaid systems that will ensure that the highest quality of services are available to the people who need them most.


          Without rehabilitation, I would now (if I were still alive) probably be living in an institution, either a hospital or some other kind of facility with 24-hour care. People today are leaving emergency rooms and going directly to hospitals to live the rest of their lives because they don't have adequate access to rehabilitation services.


          I am concerned about this, and this is an issue that, frankly, I don't have all the answers to. I do know these are issues that the public needs to be concerned about. And I believe in the democracy that we live in and I believe that America has the resources and the will to address these issues.


          Finally, let me close with some remarks about opportunity for people. Opportunity is the one thing we can give people in America that other countries can't necessarily offer. We can give people--regardless of their station in life and regardless of whether or not they have a disability-the opportunity to work; we can give them the opportunity to be productive in their homes and their communities; we can give them the opportunity for an education; we can give them an opportunity to be full participants in the social and economic work of our communities and our nation. Opportunity lost is opportunity sometimes not gained again.


          We have done a lot in this country, more than any other country in the world. I believe it is our responsibility to show to other countries, because we are becoming in fact a global society, and we can't stand alone. We know that as a result of September 11. We are not alone in this world. And people with disabilities in other countries in the world seem very, very much alone. They are being abused, they are being killed, infanticide is alive now in some countries-and it all relates to disability. Because disability is devalued; people with disabilities aren't expected to accomplish anything, and therefore they are of little value in some societies. We have a moral commitment not to believe that, and I think we have a social commitment to the world at large. Therefore, many of us, including the National Council on Disability, have called for a United Nations Convention on the Rights of People with Disabilities, one that would take the principles of the Americans with Disabilities Act, the principles of equal opportunity and nondiscrimination, around the world.


          There are a few things that Americans can export to the world that the world would like to have. Equal opportunity, rights for people with disabilities, and opportunity for people with disabilities to live and work as a part of the full society are concepts that I believe we can export and that people would like to have. Therefore, I think the United Nations should consider seriously-and I believe it is-the call for a UN Convention on the Rights of People with Disabilities. And I believe that we in this country should not only support, but lead in that effort.


          Thank you today for your attention. I am happy to answer any questions you may have.


MODERATOR: Thank you very much. We will open up this session to questions. As you ask a question, please identify your media outlet and give me your name. Anyone?


SPEAKER: John Williams, National Organization on Disability and AT508.com. What are the administration and Congress doing to address this problem now? And is this a problem that does need more money from the federal and state governments?


MR. FRIEDEN: John, I mentioned several problems. Let me first explain that the National Council on Disability is a group of 15 members who are appointed by the President and confirmed by the U.S. Senate. It is the role of the Council to provide advice on issues of disability policy to the President, to the administration, and to Congress. The Council has made a number of recommendations pertaining to these issues. We are currently in the process of making additional recommendations. Our main agenda is to drive these issues forward as the public sees fit.


          So we have a very open, democratic process. We have the opportunity for public input on the website (<www.ncd.gov>); we have the opportunity for public hearings. We are engaged in a number of research projects right now-policy research projects that deal with the issues of Medicaid reform, Medicare reform, health care policy, personal assistance services, and long-term care, as well as rights of people with disabilities.


JOHN: Okay. I would like to hear you answer my question. Are the administration and Congress seriously looking at the problem, and is money from the federal government, is money from states needed for these resources?


MR. FRIEDEN: Well, let me give you one example, John. I think the answer generally to your question is yes and no. A number of these issues clearly are being addressed in a global perspective by Congress and by the administration. We have heard about health care reform, we have heard about Medicaid and Medicare reform, and we certainly know these issues are in development. Whether they are addressing these issues from the perspective of people with disabilities is unclear at this point in time.


          I can give you some examples to indicate that there are concern and real effort to ensure that the issues pertaining to disability are incorporated in reform. For example, the administration proposed in the 2004 budget $1.75 billion that would go to foster community living for people with disabilities. I think that is a remarkable proposal, and I hope Congress takes advantage of the opportunity to pass those funds along to the states through the Medicaid programs to help develop the infrastructure for personal assistance in this country. So that is one example where there is a positive step forward. And I know that members of Congress are concerned about many of these issues, just as the administration is. So I am hopeful that if we can put these issues on the table, they will be addressed.


          You asked about resources. Clearly, we have to have more resources to solve some of these problems. But that's not the only solution. In fact, the bottom line is to make sure that our policies and practices are in place and then determine what resources are needed to ensure that we can meet our objectives.




SPEAKER: Yes. I am David Waugh with the Committee on Disability: People to People International. Everyone these days, I am sure, is reflecting on the responsibility of war in Iraq. But that raises a larger question of the war wounded and disabled, perhaps Afghanistan more recently, but many other places now where U.S. actions are precipitating the increasing number of disabled people. What is the U.S. government doing currently to deal directly with that issue? And what do you think is in place for Iraq and perhaps other places as we get into more foreign ventures?


MR. FRIEDEN: Well, first of all, I would like to question the basis of your question. You propose that disability at war is being caused by the actions of the United States. As a matter of fact, I think the actions of the United States are in preventing disability and death caused by despot dictators and others around the world.


          That said, I think the United States is trying to prevent disability and further disability. However, there is no question that conflict, regardless of whether that is domestic conflict or international conflict, often results in injury and disability. And it is clear to me, based on what I have heard in the media, based on what I know, that the United States is doing everything that it can do to avoid unnecessary injury.


          The United States is doing everything it can do to ensure that there are appropriate services are brought in following conflict. That is clearly the case in Afghanistan, where a number of voluntary organizations are working, some of them as government support, to provide prosthetic limbs for people who have been injured, not as a result of our nation's intervention but as a result of years of fighting before that and years of inadequate health care and rehabilitation. So we have a number of organizations, many of them members of Rehabilitation International, who are active right now in Afghanistan and other parts of the world, trying to promote rehabilitation. Much of their work is sponsored not only by the U.S. government, but by other governments around the world.




SPEAKER: Doris Margolis, Editorial Associates and the former editor of the Journal of Rehabilitation. Are you working with AARP to help mobilize the people who are in the baby boomer generation and who will need rehab services as they get older-are you working with them to mobilize them to action and to use their political clout or are you just trying to support rehab and especially personal assistance for people to keep them in their community as much as possible? MR.


FRIEDEN: Well, to the extent that AARP is open to communications about these issues, absolutely. I think many disability groups are trying to bridge that gap. The reality of the situation is, however, that organizations like AARP poll their members, they have a board that determines what their priorities are, and sometimes their priorities don't necessarily agree with mine or those of other people with disabilities.


          I believe that, however, they are aware of the pending crisis in terms of community living opportunities, and they are working, as are many other groups, to ensure that there is an infrastructure in the country to provide support to people. But I don't think any of us are working well enough together, and I don't think any of us are working hard to enough to ensure that those who are not now disabled aren't confronted by the same kind of realities that many of us faced when we became disabled at an earlier age.




SPEAKER: Hi, Lex. Good morning. Mariana Work, Americans Association of  People with Disabilities. One thing about AAPD is that one of our greatest concerns is to ensure that all people with disabilities are given equal rights at the polling place to exercise their constitutional right to vote in this country. But we live in a country where a huge percentage of polling places are not even accessible to people with mobility disabilities. The equipment is not accessible to people with visual impairments. The Help America Vote Act in October was a great step in the right direction. But the monies being allocated from HAVA are slowly being allocated elsewhere, away from polling place access specifically. That, combined with all our states' budget deficits, means I'm not seeing a huge light at the end of the tunnel. I would like to know what the administration's commitment is to ensuring that every person with a disability has a right to exercise their constitutional rights in this country.


MR. FRIEDEN: Well, let me be clear. I cannot speak for the administration. The National Council on Disability is an independent federal agency bound to provide advice to the administration and Congress. I can say that from the standpoint of the Council, we have promoted the concept of equal opportunity voting for people with disabilities for many years, and the Council continues to monitor that. We are prepared to collect data from people who may have been frustrated as they tried to vote.


          Interesting to me: Many polling places where people have difficulty are in schools and other public facilities that ought to be accessible for many, many other reasons. And so, to the extent that people going to vote turns up these barriers that none of us expect to be there, I think it is a very constructive thing. To the extent that people are frustrated going to vote, it is also a very good thing, because it means they want to vote. And to the extent that people will find a way to help them vote despite the current barriers, I think that is a good thing. I hope that nobody is turned down from voting and that there are election judges in every precinct who will find a way, even if it is not the best or the required way for the time being. And I hope that we can solve that problem in the near future, because I know that one of the most frustrating things in the world is to be encouraged to go and do something, believing that it is your right and your obligation to do so, and then not be able to get in the front door of the polling place.


MARY: Thank you, Lex.


MR. FRIEDEN: Thank you.


MODERATOR: Did you have a question?


SPEAKER: I am Brunilda Sandoval, Ms. Wheelchair DC 2002. I would like to know what is the National Council on Disability going to do about training for bus drivers who argue with you when you ask them for a seatbelt, or don't know how because they have never had to use it and they tell you that they don't know how to use it. MR.


FRIEDEN: Transportation for people with disabilities is one of the keys to independence. And all of us, if we think about mobility, know that. We are not living in a society where we can manage our lives and enjoy our lives from a single point. And this is really one of the problems with living in institutions: There is no way out of the institution, simply no way. Transportation becomes a great challenge, particularly in rural areas in the country where they don't have established metropolitan transit agencies. The Council has made a number of recommendations about improving those options.


          In terms of what local transit authorities may or may not do to ensure that they provide good access to people with disabilities and safe access-and you mentioned seatbelts-this really is the responsibility of the local transit authority. In my experience, communication with the transit authority at the local level is the best way to solve that problem, because those are the people who can fix it. On the other hand, it is clear to me now that the Department of Transportation, when it receives complaints from individuals who have been at risk because of the kind of practices that you mentioned, will take action and make the appropriate inquiries and provide the appropriate guidance to local transit authorities. So my advice to you is to first (and you probably already have) try to work it out with the local transit authority. If you are frustrated in that process, explain the situation to the Department of Transportation. In my experience, they are very good at following up on those kind of complaints.




SPEAKER: Andy Netzel, with the Houston Chronicle. You said you were unclear about the impact of certain legislation before Congress, like Bush's health plan, and also you were adamant about protecting the integrity of the ADA. Where do you see the threats or things that could go kind of either way in the coming months? MR.


FRIEDEN: Well, it is hard to predict because we don't know the pace at which any of these reform packages will move forward and we don't know the details about the proposals that have been offered. My point here is that people with disabilities need to be part of this process. And whether they acknowledge it or not, the public needs to look at this process about people with disabilities, in part because they are likely to be one of us at some point during their lives. Therefore, when you look, for example, at Medicaid reform, I think it is important to change the balance of the funding for services that now go to institutions that probably ought to be going more to the community. That may require more funding; it may require readjustment of current funding. But we have to understand the implications of the aging society and the effect of the baby boom generation on demographics and service demands. That's just one example. But I think we are all obliged to be a part of the process. And in order to effectively be a part of the process, we have to become more knowledgeable about what the issues are.


          In terms of the Americans with Disabilities Act, from time to time we have seen the Supreme Court take up certain questions. The National Council on Disability is in the process of providing a whole series of reports that are available on our website and will be announced as they are developed. These reports are designed to help the public-and the Court-understand, to the extent that they choose to study the reports, what some of the central issues are from a legal and technical perspective, and also from the standpoint of people living in America.


ANDY: What are the pieces of legislation that you are keeping an eye on? MR.


FRIEDEN: In general, we are keeping an eye on efforts to amend the ADA, and there have been some suggestions about that. We are keeping an eye on the packages that have been introduced or announced in terms of Medicaid and Medicare reform. And we are watching what happens in the process of the reauthorization of the Balanced Budget Act and the Rehabilitation Act.




SPEAKER: Brewster Thackery here with the National Organization on Disability. Lex, what are your thoughts on the ADA Notification Act?


MR. FRIEDEN: Well, I have a number of thoughts about the ADA Notification Act. What I don't understand is this. If the law requires you to have an accessible restaurant, for example, it seems to me that when the law was passed, when the regulations were written, and when this was publicized, you have had notice that you need to have an accessible restaurant. Now it also seems to me that if you are discriminated against on any basis, then you have the right to file a complaint without giving notice. Therefore, if you are not able to get into the restaurant because its management has ignored the law for an extended period of time, I don't understand why you should be expected to "give notice." I hope that summarizes my views about prior notification in the case of ADA issues.

BREWSTER: Will NCD be actively--do you have a position paper on it, or will you?


MR. FRIEDEN: Depending on how the law may be proposed, we will certainly have commentary about that. And a number of the papers that we have already done address that issue generally.


SPEAKER: John Williams. Lex, how important is it for people of our age and beyond to have access to technology that will help us maintain our independence? And what is NCD's role in publicizing it?


MR. FRIEDEN: John, I think all of us recognize the impact of technology on our lives. And people with disabilities-whether we acknowledge it or not, whether we recognize it or not-the quality of our lives has been improved just like everybody else's through the advent of technology. But there is much, much more that we can do. In fact, the President has recognized the fact that much of our technology is dormant today that could be applied to the benefit of people with disabilities. So there is a great need for those who are involved in the process of technology transfer, in particular, to look at the opportunity to provide assistance to people with disabilities as they explore the many uses of new technology. Clearly, there are opportunities that haven't yet been addressed.




SPEAKER: Henry Betts. I am a physician of physiatrics and a professor at Northwestern in Chicago. Obviously, there are a lot of factors that are deterring people with disability from being able to be participatory in society, all pretty stupid it seems to me. I mean, there is strong demand for equality from the Declaration of Independence, not to mention the ADA. There are a lot of deterrents, but quite unnecessary, it seems to me. There are two particularly that I wanted to mention and question that it seems should have vigor in being attended to.


          I look at it partly because both of them (remember, I'm a physician) I consider highly, highly therapeutic, I mean highly significant in helping people to have more self-esteem and be part of society. One is the issue of being independent at home. When I was in medical school, all people with disabilities were sent to a place called the "Home for the Incurables." Now, I don't think there are any signs saying "Home for the Incurables" anymore. But nursing homes, obviously, are not as effective in achieving a sense of belonging as being at home. And economically, it is very satisfactory to go home instead of to a nursing home, if a lot of people are looking at the economics of this.


          The other issue is jobs. Seventy percent of people with disability who could be working are not working. There is an obvious economic advantage to having people go to work. And yet both of these areas move ahead extraordinarily slowly, it seems to me, and they're the most obvious things that can really accomplish a huge amount and make it possible for people with disabilities to be in the community and eventually very productive.


MR. FRIEDEN: Dr. Betts, you have raised two paramount issues, and issues that are obviously of great concern to me and to the Council. The first of those being the issue of economics as it relates to institutionalization of people and quality of life, of course. It is clear (I hesitate to be too critical of nursing homes, because many people have needed nursing homes in the course of their lives) that nursing homes are not designed to promote full participation in the society and an active role in a person's family and community. That is very clear. It is also clear to us, and we have many examples, that there are people with disabilities who are far more impaired than many people living in nursing homes who are productive in the community, who are working, who are paying taxes and helping to support some of those who are indigent and living in nursing homes.


          From an economic standpoint, there are many variables that should compel us to further develop support services in the community. But right now, it is very difficult and challenging for people to live in the community. There is not enough accessible housing, particularly for people who don't have substantial means. There are not enough public housing projects that have full accessibility for people with disabilities. And transportation, even though we have made great strides forward, is sometimes restricted, particularly, as I mentioned, in rural areas. Most important, people can't get the help they need in their own homes. And that is because, in my view, we haven't fully developed the infrastructure, we don't have a system of providing support services at home. And yet, as you say, economics compels us to look at that, and the fundamental rights of the individual compel us to look at that. I think this is a great opportunity for this nation to step forward, particularly knowing the coming impact of an aging society.


          The second issue you mentioned, which pertains to work, is particularly frustrating to me because we have created through our policies some of the barriers that prevent people from going back to work after experiencing a disability even for a short time. Even those of us who are able to adapt in one way or another to our disability and go back to work are faced with certain kinds of policy-related barriers and disincentives that need to be addressed. The Council has done a number of reports about this. Actually, Congress and previous administrations have tried step-by-step to remove some of these disincentives. But let me give you an example.


          Many people who are receiving public assistance today as a result of a disability might be able to go to work, but they risk losing their health care benefit if they do so, because prospective employers aren't providing health care insurance or benefits, or, if they do, their plans may not cover disability. As a result, the only safety net people have is to remain beneficiaries of public programs. This prevents many people from working who could work, who would prefer to work, and who could be contributing members of our society if they did work. They would be happy about working, they would have more money to spend if they were working, and yet most people (and I think you would have to agree that they are using good judgment) will not go to work because they will lose their health care benefits if they do.


          Now there are a number of programs in place, and everyone who is affected by this situation should contact the authorities, the sponsor of whatever benefits they are receiving. There are programs right now under the federal authority whereby people can go to work and retain the health care benefits they had while they were not working. Certain programs in Medicare-buy-in programs-will allow people to go back and buy into the health care program that they qualified for originally. But each case is different. I don't think the public in general is aware of the possibilities, and I think we have to do a lot more to remove these kinds of disincentives from people.


          If you look, I think the latest data indicate that less than 3 percent of people who are disabled and qualify for Social Security disability insurance ever go back to work. That is largely because they are afraid of losing certain benefits. I don't think it is the cash benefit that they receive that is preventing them from going back to work, because they could likely earn more by working. But by the time you discount all the other associated benefits-health care and other benefits that people may be eligible for as a result of qualifying for SSDI-it doesn't make sense for them to go back to work because, if they do, they are responsible for paying for their own attendant care services, their own assisted devices, and sponsoring their own insurance one way or the other in many cases. This prevents a lot of people from getting back into the workforce. What if we didn't take away any of the benefits people have qualified for under Social Security disability insurance, and they went back to work? Would we be worse off? No, we would be better off, because they would be working and probably paying taxes and contributing to that which they use. So, it is a good point. Thank you for your question.




SPEAKER: I am Lou Previa. I'm a Press Club member and have been a consultant in this area. Do you have a list of those barriers? To me, it is terribly important if full participation of people who are disabled means that they have fulfilled their life, that they are making a contribution and they are living a fulfilled life. Those kinds of barriers are profoundly significant, identifying them and pointing out what can be done to get over them. Do you have a plan that would address those?


MR. FRIEDEN: Yes. If you go to the NCD Web site at <www.ncd.gov>, you will find a number of policy recommendations that we have already put forward-some of them in the form of letters to the President and to Congress, some of them in the form of professional research studies-and you will also find a current work plan, which is designed to address a number of these issues.


LOU: Would that include a "How To" for people like us who are regular citizens as to what we can do to help?


MR. FRIEDEN: The "How To" is a difficult problem to address. From the standpoint of the Council, because we are not an advocacy organization, we can do a limited amount of "How To" work. Each government agency has a number of resources available to it. In my experience, if you go to any good search engine on the Internet, I think you can type in "how to" and the subject and you'll find the appropriate website. I know that the Department of Labor just introduced a new website that has a lot of information about getting past the barriers to work for people with disabilities. The Department of Education has an excellent website that focuses on disability issues and how to resolve those issues when it comes to barriers to people with disabilities in education.


          At this point in time, that is the best that I can offer. There are other organizations, obviously. You can contact the American Association of People with Disabilities, which has the resources to provide some referrals at least. I think there is information out there. The problem is that it is not always where every person can get it.


          I would like to make another point here, too. That is, most of us assume that everyone has access to the Internet and the Worldwide Web. The reality of the situation is that many people without a good economy don't have access to the Web and the Internet. And most of those people happen to be persons with disabilities. Unless there is a public Internet site nearby-at a library, for example-that they can get to, given the other barriers we have discussed, they are frustrated by a lack of information. The telephone may still be the best bet for these people. Many organizations, particularly the federal agencies, have 800 numbers that people can call, and hopefully those systems are working. If not, the Council would like to know about it so that we can do a report and make recommendations.


MODERATOR: We have time for one more question. Yes?


SPEAKER: David Waugh from Committee on Disability: People to People International. You mentioned the UN convention as a priority. I wonder if you could tell us just a little bit about that. How is it progressing? And is there a timetable for it?


MR. FRIEDEN: The United Nations Convention on the Rights of People with Disabilities has been introduced to the United Nations as a proposal. As is the case for most conventions, it is going through a routing process. An ad hoc committee is set up to study and provide advice to the General Assembly about the convention. There will be a meeting of the ad hoc committee in June 2003; Council members will be there to provide input on the convention. I hope by that time the U.S. Mission to the United Nations has recommendations to make in support of the development of the convention. I know that a number of other countries will be there with recommendations about the language for the convention.


          At this point in time, the effort is to determine the parameters of the convention. Obviously, those of us in the United States, in Western Europe, and in many other developed countries are pressing for a convention that will ensure the rights of people with disabilities. At the same time, people in Africa, in Latin America, in parts of Asia, and other parts of the world are pressing for a convention that will deal with many of the economic issues and the lack of services that people with disabilities face in their regions.


          So the challenge now is to build a convention that will address the economic impact of disability as well as the discrimination and frustration of opportunity caused by disability. That is where the process stands right now.


MODERATOR: Okay. Thank you. Mr. Frieden, on behalf of the National Press Club, thank you very much for joining us today.


MR. FRIEDEN: Thank you.


MODERATOR: If anyone would like an audio replay of today's presentation, you can go to our website at <www.press.org>. Thank you. [Applause.]