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