Furthering the Goals of the Americans with Disabilities Act 
Through Disability Policy Research in the 1990s

Summary of Proceedings

Publication Date:  December 31, 1993

National Council on Disability
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Washington, DC  20004-1107

(202) 272-2004 Voice
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The views contained in this report do not necessarily represent 
those of the administration, as this document has not been 
subjected to the A-19 Executive Branch review process.


Letter of Transmittal

December 31, 1993

The President
The White House
Washington, DC 20500

Dear Mr. President:

I am pleased to provide you with the National Council on 
Disability's report entitled Furthering the Goals of the ADA 
Through Disability Policy Research in the 1990s:  Summary of 
Proceedings. 

As the federal agency that initially proposed the Americans with 
Disabilities Act of 1990 (ADA), the National Council feels a 
particular obligation to ensure that the ADA is fully and 
successfully implemented.  With this ongoing effort in mind, the 
Council conducted a national conference on December 7-9, 1992, 
designed to initiate dialogue on furthering the goals of the ADA 
through disability policy research, to identify the resources and 
infrastructures available to enhance the process, and to 
articulate steps that can be taken to monitor the implementation 
of the Act.

The conference, which was cosponsored by the National Council on 
Disability and the National Institute on Disability and 
Rehabilitation Research, drew nearly 200 participants 
representing the community of people with disabilities, senior 
administrators, and accomplished academicians.  Beyond the many 
recommendations detailed in the report, we are most pleased to 
inform you that the process underlying the conference was one 
wherein we brought constituencies who would be directly affected 
by the outcome into the discussion as equal participants from the 
beginning.  We believe this reflects your "putting people first" 
approach to government and hope that you will agree with us that 
the recommendations resulting from this process are responsive to 
the needs of all Americans with disabilities.  Once again, thank 
you for this opportunity to be of service.

Sincerely,


John A. Gannon 
Acting Chairperson  

(The same letter of transmittal was sent to the President Pro 
Tempore of the Senate and the Speaker of the House.)


National Council on Disability
Members and Staff:  December 1993

Members
John A. Gannon, Acting Chairperson
A. Kent Waldrep, Vice Chairperson
Linda W. Allison
Ellis B. Bodron
Larry Brown, Jr.
Mary Ann Mobley Collins
Anthony H. Flack
Robert S. Muller
George H. Oberle, PED
Sandra Swift Parrino
Mary Matthews Raether
Shirley W. Ryan
Anne C. Seggerman
Michael B. Unhjem
Helen W. Walsh

Staff
Edward P. Burke, Acting Executive Director
Billie Jean Hill, Program Specialist
Mark S. Quigley, Public Affairs Specialist
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
Janice Mack, Administrative Officer

Editors
Edward P. Burke, Acting Executive Director
Mark S. Quigley, Public Affairs Specialist


Table of Contents

Executive Summary
Section I:  Proceedings
Section II:  Conclusions and Recommendations
Section III:  Appendices
  Appendix A:  Conference Agenda
  Appendix B:  Participant List
  Appendix C:  Speaker List
  Appendix D:  The National Council on Disability:  A Brief 
Description

Executive Summary

The landmark Americans with Disabilities Act of 1990 (ADA) 
signaled a new era in protecting the civil rights of persons with 
disabilities.  Since the passage of the ADA, much attention has 
been focused on assessing the ADA's impact and on broader issues 
of disability policy.  Research, utilizing both quantitative and 
qualitative methodologies, is a crucial tool for assessing the 
current status of the implementation of the ADA and for 
monitoring the effects of the ADA.  However, the young and 
rapidly evolving field of disability policy research has been 
hampered by inadequate data and by lack of consensus about the 
most appropriate ways to study and assess disability policy.

On December 7-9, 1992, the National Council on Disability and the 
National Institute on Disability and Rehabilitation Research 
(NIDRR) cosponsored a conference entitled Furthering the Goals of 
the Americans with Disabilities Act Through Disability Policy 
Research in the 1990s in Washington, DC.  The main goals of the 
conference were (a) to initiate dialogue on furthering the goals 
of the ADA through disability policy research, (b) to identify 
the resources and infrastructures available to enhance the 
process, and (c) to articulate steps that can be taken to foster 
disability policy research.  Conference sponsors also hoped to 
make progress in establishing a research agenda for the 1990s 
that would be responsive to the goals of the ADA.  Nearly 200 
participants attended all or part of the conference. 

The conference included plenary sessions on disability research 
and enforcement of the ADA; putting research to work for the 
realization of the goals of the ADA from the perspectives of the 
disability community and of minorities and other underserved 
populations; shaping an interdisciplinary field of disability 
studies responsive to the goals of the ADA; strategies for 
adopting a common nomenclature that is responsive to the goals of 
the ADA; research strategies for statistics using survey data; 
the role of quantitative and qualitative methodologies; research 
strategies for monitoring the ADA; and future trends in 
disability policy research.

Conference attendees also participated in eight smaller 
"breakout" sessions.  These sessions examined topics such as 
equality of opportunity, full participation, independent living, 
economic self-sufficiency, issues related to special populations, 
emerging issues, building a disability studies discipline, and 
creating a common nomenclature and classification.  The 
discussions of each breakout session were reported to all 
conference attendees during later plenary sessions.

Participants in the conference engaged in dialogue on many 
issues.  Some of these issues, such as full participation of 
persons with disabilities in research, the most effective mix of 
qualitative and quantitative research approaches, and use of a 
common nomenclature, were not resolved.  Nevertheless, conference 
participants provided guidance on building infrastructure and 
establishing priorities for future disability policy research.
In terms of infrastructure, greater coordination among federal 
agencies concerned with disability policy is clearly needed.  
Additionally, the efforts of NIDRR's Interagency Committee on 
Disability Statistics, which unites data producers and consumers 
within the federal government, must be supported and enhanced.  
Other relevant interagency committees involved in examining aging 
and health issues, in which disability can play a role, must be 
encouraged to make disability a consideration in all major 
federal policy decisions.

In terms of concrete suggestions to foster disability policy 
research in the 1990s, conference participants suggested some 
immediate steps that will have an impact in the short term.  
These steps include establishing a set of disability indicators; 
continuing study of the World Health Organization's International 
Classification of Impairments, Disabilities, and Handicaps; and 
ensuring funding for the 1993-94 Disability Supplement to the 
Federal Census.

Over the long term, conference participants recommended the 
following actions:  involving persons with disabilities 
(including members of special populations) in the research 
process; developing positive measures of functional capacity and 
accommodation rather than relying on existing medical models; 
disseminating information in formats that policy makers can use; 
developing ways to integrate qualitative and quantitative 
research methodologies; improving assistive technologies; 
improving health insurance coverage for persons with 
disabilities; and continuing to develop the field of disability 
policy.
Section I:  Proceedings

Monday, December 7, 1992
Plenary Session

Opening Remarks

Speakers:
  Sandra Swift Parrino, Chairperson, National Council on 
Disability 
  William E. McLaughlin, Acting Director, National Institute on 
Disability and Rehabilitation Research

Sandra Swift Parrino, Chairperson, National Council on Disability 
My name is Sandra Parrino, and I'd like to welcome you to the 
conference this morning.  I am here as chairperson of the 
National Council on Disability (NCD).  I'm happy to say that 
there are several members and staff of the National Council with 
us today.  We're very pleased you could find the time this very 
busy holiday season to join us.  

I'd like to begin by thanking the National Institute on 
Disability and Rehabilitation Research (NIDRR) of the United 
States Department of Education for their support of this 
conference.  Mr. Bill McLaughlin, who is the acting director of 
NIDRR, is representing the agency today.

The idea for this conference came from a conversation that I had 
with one of our distinguished presenters over a year ago at a 
meeting of the American Public Health Association in Atlanta.  
Dr. Mitchell LaPlante of the University of California at San 
Francisco approached me to talk about some of the problems he 
repeatedly encountered in conducting his research.  After a 
number of discussions, we conceptualized the idea for this 
conference.  So I would like to give Mitch credit for initiating 
what I believe will be a landmark conference and the beginning of 
some important national and international initiatives.

After my discussions with Mitch, I approached Dr. Bill Graves, 
the former director of NIDRR, to discuss how we might join forces 
to promote disability policy research.  We agreed that a joint 
conference was a good place to begin.  So, a year and many memos 
later, here we are.

This conference today was generated from concern about the future 
of disability policy.  The enactment of the landmark Americans 
with Disabilities Act (ADA) was the beginning of a new era for 
disability policy.  It also marks the end of an era.  The era 
that is ending is one characterized by ideals, enthusiasm, and 
determination, and a notable lack of data.  The era that is 
beginning must continue to be inspired by ideals, enthusiasm, and 
determination, but it must be supported by a database.

The post-ADA issues we struggle with in disability policy demand 
database information:  personal assistance, health insurance, 
technology, productivity in the workplace.  We must have solid 
information to provide to decision makers as they are confronted 
with policy choices.  

One of the many contributions of the ADA is the establishment of 
national goals for individuals with disabilities.  For the first 
time in our nation's history, our disability policy has 
overarching goals.  These goals are equal opportunity, full 
participation, independent living, and economic self-sufficiency.  
These goals are big promises to Americans with disabilities; 
promises the provisions of the ADA alone cannot meet. 

Consider the area of employment.  Today, about 13 million 
Americans with disabilities are jobless.  About 28 percent of all 
disabled people live in poverty, and another 50 percent are 
near-poor.  While discrimination is surely a culprit in this 
joblessness and poverty, so are lack of education and job skills
and access to personal assistance.  The ADA will not provide 
education and job skills and personal assistance for people with 
disabilities.  While we have these laudable goals in the ADA, we 
still have a system which largely promotes dependence.  
The costs of supporting people with disabilities have skyrocketed 
over the past 20 years.  Although the federal government does not 
compile an annual accounting of private and public disability 
expenditures, economists at Rutgers University have estimated 
that expenditures to provide people with work disabilities with a 
cash income, medical care, and other services rose 300 percent 
between 1970 and 1986 to a whopping $160 billion.  These costs 
will only grow over the next 20 years as the baby-boom generation 
ages and acquires disabilities in increasing numbers. 

So, how are we going to make these billions of dollars promote 
independence, rather than dependence; working, rather than not 
working; living in the community, rather than living in 
institutions?  How are we going to put our money behind our 
goals?

New policies in the areas of health insurance, personal 
assistance services, and assistive technology are required.  We 
need data and analysis to promote these desperately needed new 
initiatives.  We can't ask policy makers to mandate comprehensive 
personal assistance services just because it's a good idea.  We 
have to be able to demonstrate its effectiveness and its payoff.  
We have to mobilize research skills and results to support our 
goals for individuals with disabilities.

And how are our disability policies of the future going to 
address minorities with disabilities?  Minorities with 
disabilities now experience dual discrimination.  They are more 
likely to be poor and unemployed than their white counterparts 
with disabilities.  Minorities are at greater risk for developing 
disabilities and are overrepresented in the population of persons 
with disabilities.  We have got to put our research to work to 
address this injustice.

We also have to look toward generic programs to address the needs 
of people with disabilities, not just disability-specific 
programs.  Vocational rehabilitation provides important services 
to people with disabilities.  But what about the Job Corps and 
initiatives generated under Job Training 2000?  What about 
America 2000 in Education, and Healthy People 2000, initiated by 
the Department of Health and Human Services?  The initiatives 
developed in the area of health care reform will provide critical 
opportunities to ensure that Americans with disabilities are part 
of the new generic policies, not an afterthought.  We must be at 
the table, with our goals, our values, our determination, and our 
research.  

The enactment of the ADA has created important international 
opportunities as well.  Just as disability policy offers 
important bipartisan opportunities in domestic policy, so it can 
be a strong area of mutual agreement in international policy, for 
the ADA embodies many of the principles articulated in the United 
Nations World Program of Action for People with Disabilities.  
Many countries, both developing and industrialized, are watching 
closely as we implement the ADA.  They want to know if this 
landmark legislation really improves the lives of people with 
disabilities.  

How will we know the answer to this question?  How will we be 
able to share what we learn with our colleagues from abroad?  We 
have no mechanism in place to determine the impact of the ADA.  
We don't know the employment rate for people with different 
disabilities in different sectors of the workplace.  We don't 
know how the ADA is affecting the workplace.  And if we did know, 
we probably couldn't share our knowledge with other countries in 
meaningful ways, since we don't adhere to the international 
disability classification scheme, the International 
Classification of Impairments, Disabilities, and Handicaps 
(ICIDH).

The United States needs to take an active role in working toward 
worldwide standardization of the international classifications.  
This is essential in order to share our information with others 
and meaningfully compare experiences of other nations with ours.  
To exchange information about policies and their impacts, we must 
have data.  One of the goals of this conference is to further the 
participation of the United States in the utilization of this 
international classification scheme.  We will hear more about 
that in Session 4 of this conference.

We have three goals for this conference today.  The first is to 
initiate a dialog between researchers, people with disabilities 
and their advocates, and policy makers about how disability 
policy research can facilitate meeting the goals of the ADA.  The 
second is to consider what resources and infrastructure are 
necessary so that the needed disability policy research can take 
place.  The third is to articulate steps that should be taken to 
generate the resources and infrastructure we need.

We have asked our presenters to examine these questions from 
their various fields and perspectives.  By the end of the 
conference, we hope to have a clear sense of how to proceed from 
here.

So, once again, on behalf of the National Council on Disability, 
I welcome you to the conference.  I would like to extend a 
special welcome to the graduate students who are here with us for 
the conference.  We hope that the presentations you hear and the 
conversations you have will be an inspiration to your future 
careers.  I encourage all of you here today to take advantage of 
the lunch periods and informal times to talk in depth with each 
other, and I look forward to having the opportunity to talk 
informally with you as well.

William McLaughlin, Acting Director of the National Institute on 
Disability and Rehabilitation Research (NIDRR)

Let me give you an idea of what we are up to at NIDRR at the 
moment and give you a reference to your conference here.  We have 
32 staffers, which I think is pretty well known.  We are a small 
group; our current budget is 102 million dollars, 68.7 percent of 
which goes to research and 34.1 percent to state technology 
assistance grants.  We have 44 published priorities currently in 
competition.  I won't read all 44 of them, but in terms of 
headings in the medical and comprehensive rehabilitation area, we 
have 12 priorities and the first of those came out, I believe, on 
Friday.  There are 14 in the medical environment.  In the 
psychosocial and vocational rehabilitation area, our first group 
has 14 priorities and there is a second group with 5 priorities.  
We have in the research and demonstration project area 2 
priorities published, the first of those in family, psychosocial, 
and transitional issues of children and youth with epilepsy and 
model systems for burn injury rehabilitation.  Then we have 10 
rehabilitation engineering center priorities and we believe those 
to be published momentarily.  When you add all that up, it means 
that we will be holding approximately 40 competitions in the next 
few months.

We've just completed the field-initiated research competition 
with approximately 150 applications and will be dealing with the 
prefunding aspect of that competition in about another 30 days.  
With the major centers involved in the research environment 
affected by NIDRR's funding, I discovered that the expiration 
date of these 5-year centers and the competition date on which we 
were going to be publishing were badly out of sync, that is, 23 
of these centers would be running out of funding by the end of 
January and we would not be concluding competitions and making 
new awards until sometime around April, May, or June.

So I was able to talk with a number of lawyers in the department 
who will be providing supplemental funding for a significant 
number of those centers to engage in research dissemination, 
particularly in reference to the way the reauthorization reads 
and with an effort to capture what those 5-year centers have
achieved in alternative formats and in a widely expanded effort 
to learn what they have learned.  That enabled us to overcome 
what we think was a major administrative hurdle.  We will be 
holding what we hope will be an equitable competition and by June 
or thereabouts we hope to know which combinations of the existing 
centers will be successful competitors.

We have 42 states currently engaged in state technology 
assistance program activities and during the noon hour today, I 
will go over to the Mayflower Hotel where they are meeting.  I 
think all of you know that we also have 10 ADA-based regional 
disability and business technical centers.

As far as this particular conference is concerned, I looked at 
your themes and your topics, building bridges through research 
which lead to employment, access, inclusion, and independence, a 
philosophy of consumer participation, consultation and guidance 
in priorities and research practices.  On December 14, I am 
pulling a group together, which Bill Graves started on September 
13 to look at this whole question of consumer involvement in the 
research process and the constituency involvement.  We're taking 
a very serious look at that and may well be moving Sandra to our 
questions of policy as it relates to consumer world and 
involvement in the research activity.  Without question, our goal 
is an accurate, efficient, and effective use of research 
resources, with an understanding of the many disciplines and 
parties involved.

I have the responsibility at the moment, along with the Assistant 
Secretary, for establishing our 1994 priorities.  We're very 
close to a fairly comprehensive list for 1994.  But you'll find 
in the federal cycle of events when you have a major competition, 
as we do this year for many of our major centers, and then you 
move to the next year with your priorities and then you try to 
equate the funding to the priority picture you have going-big 
awards going this year, a lot of new centers-and then where do 
you find yourself in moving toward the next year's priorities?  
So we're working at that with an efficiency in mind and, 
hopefully, application of the money.

I was particularly intrigued with Sandra's remarks and your 
agenda, and we want to support the finest and statistically sound 
reporting with regard to data utilization.  The interagency 
committee on disability research has had off and on years over 
the decade.  We've identified that as one of the problems for the 
incoming administration to see how this coordinating law that 
we're charged with can be more effective.  For the last several 
years, there has been a subcommittee on statistics and they have 
been a very outstanding group, so I think there are bodies of 
people out there ready to go to work on recommendations that 
you'll be making.

My final comment is that the conference will assist NIDRR and 
whomever and however the leadership is determined in the months 
to come.  I am looking forward to our implementation of the 
recent reauthorization of Title II.  The amendments to our 
previous mission enhance the role of dissemination and full 
utilization of promising research results.  I am a former teacher 
and school administrator, and the one thing that I talked to the 
Board of Education about quite frequently was research dedication 
at the elementary and the secondary levels.  It was a question of 
making research practical, making it apply, and making it fit the 
needs of those individuals who were in our classroom on that day.  
The same model exists today, and that's putting research into 
practice and the new law calls for us to work even more so on 
that.

Our interagency coordination responsibilities bring us up with 
many partnerships and, of course, the National Council on 
Disability is important in that whole sequence of events.  I wish 
you well.  I found the past 60 days as Acting Director at NIDRR a 
tremendous privilege because I have met an extraordinarily fine 
group of people here in Washington.  So good luck, and work hard.
Session I

Keynote Address:  "Disability Research and Enforcement of the 
Americans with Disabilities Act"
Speaker:  John R. Dunne, Assistant Attorney General, Department 
of Justice, Civil Rights Division

I am delighted to be here with you today to discuss what was 
described by President Bush as perhaps the single most important 
civil rights legislation of the past quarter-century-the landmark 
Americans with Disabilities Act.  I am confident that the ADA, 
which promises to open up the mainstream-and the main streets-of 
American life to full participation by individuals with 
disabilities, will be of great interest for many years to those 
involved in the thought challenging field of disability research.

Through the elimination of barriers in government, the workplace, 
and the marketplace, the ADA will promote productive, independent 
living for persons with disabilities and will enable society, at 
large, to fully benefit from their skills, their talents, and 
their dedication.  With labor shortages of skilled workers 
looming at the end of this century, and fierce competition in the 
international economy, America must tap the human potential of 
all of its citizens.  The ADA will ensure that individuals with 
disabilities will have the opportunity to make their full 
contribution to American life and reap its full rewards as well.

President Bush was a stalwart advocate of the ADA right from its 
very inception.  As Vice President, and then as President, he 
vigorously advocated comprehensive civil rights protections for 
individuals with disabilities.  At the same time, the President 
is also committed to economic growth and has worked tirelessly to 
promote America's economic competitiveness.  The ADA, by striking 
a balance between these competing but not irreconcilable 
interests, splendidly accomplishes both goals.  With the 
administration's support and guidance, Congress was able to 
fashion a law that protects the civil rights of individuals with 
disabilities, and at the same time recognizes the legitimate 
concerns of government agencies and businesses.

While the ADA may properly be described as "revolutionary," it 
was not without precedent, one with which most of you are 
familiar.  In 1973, Congress passed Section 504 of the 
Rehabilitation Act which, for the first time, recognized the 
right of individuals with disabilities to participate equally in 
programs, such as education, health care, and job training, which 
received support from the federal government.  The Rehabilitation 
Act and related legislation were extremely successful, 
particularly in the area of public elementary and secondary 
education, so that today, integrated, mainstream education is the 
norm for children with disabilities in public schools.

By the late 1980s, the children of this first wave of the 
disability rights revolution reached the end of their schooling 
and began to seek entry into the labor market.  It soon became 
apparent, however, that barriers-legal, physical, and 
attitudinal-which continued to exist throughout society would 
have to fall if the educational investment in these children was 
not to be wasted.  The National Council on Disability, of course, 
took the lead in identifying this problem, and in its 1986 report 
Toward Independence, recommended that Congress adopt 
comprehensive civil rights legislation to attack these remaining 
barriers to the full participation of individuals with 
disabilities in the mainstream of American life.  Only 4 years 
later, in no small part due to the extraordinary leadership of 
Sandra Parrino and the NCD, the ADA became a reality.

You have asked me to share my views on the relationship of the 
ADA to the vital field of disability research.  Appropriate 
research can form the basis for the adoption of successful 
policies that will directly meet the needs of people with 
disabilities and of entities that have responsibilities under the 
law.  Given the federal government's limited fiscal resources, we 
should direct our research efforts to areas of inquiry that will 
be of immediate value in the betterment of the lives of people 
with disabilities.

There are a series of initiatives currently in progress and to 
which many of you are making invaluable contributions through 
your support and active involvement.  I know that many of you are 
aware of, and may well be involved with, the study of the 
implementation of the ADA that the Government Accounting Office 
is currently conducting.  Presently focusing on public 
accommodations, the study will ultimately provide us with 
information that will allow us to gauge our progress in the 
implementation of the ADA's requirements in employment and 
telecommunications.

One of our cohosts today, the National Council on Disability, has 
established "ADA Watch" to monitor the ADA implementation 
nationwide and disseminate information on innovative ways that 
public and private organizations can comply with their ADA 
requirements.

In addition, our other cohost, the National Institute on 
Disability and Rehabilitation Research, has also recently awarded 
a grant to Suffolk University in Massachusetts, along with the 
Shriver Center, Children's Hospital, Boston University, and the 
World Institute on Disability to, among other things, identify 
and publicize exemplary implementation programs under the ADA.  
We hope that the results of this study will prove useful in 
furthering acceptance of the ADA's lofty goals.

In addition to these long-term studies, there are also valuable 
research initiatives in progress within the Department of the 
Interior, the Office of Technology Assessment, and in numerous 
other public and private organizations throughout the country.

There remain, however, several critical areas that have been 
neglected up until now, and towards which we should focus our 
research efforts in the upcoming years.  These areas include 
litigation monitoring, policy development, education, and 
technology.

Presently, there is no mechanism in place to track and monitor 
cases related to the ADA as they make their way through the 
courts.  Court reporter publications are geared toward reported 
opinions and therefore fail to report on most of the litigation 
that is actually occurring.  Early knowledge of pending cases 
will assist the Department of Justice in assessing the 
possibility of intervention and amicus participation.  A 
compilation of all pending cases would also provide a valuable 
tool to gauge which issues under the ADA are proving to be the 
most contentious and may require clarification through additional 
policy guidance.  Further, this type of systematic monitoring 
would verify whether there is, in fact, widespread court activity 
under the Act and that the ADA does have remedial teeth.

We also believe that a number of ADA-related policy issues would 
benefit from research.  For example, the ADA requires that both 
public and private organizations that offer examinations and 
courses necessary for the pursuit of higher education or 
professional and trade certification administer those tests under 
conditions that are accessible to persons with disabilities.  We 
have received numerous complaints of discrimination in testing, 
and difficult issues have arisen particularly with regard to 
determining the amount of additional time that constitutes an 
appropriate test modification for persons with particular 
disabilities.  Systematic research into this issue would assist 
us in ensuring the rights of individuals with disabilities while 
preserving the integrity of important standardized tests.

Another area where research would be beneficial is the issue of 
environmental illness.  In drafting the final regulations for 
Titles II and III, the Justice Department declined to make a 
categorical determination as to whether allergies and 
sensitivities to environmental chemicals qualify as disabilities 
under the ADA.  Given the uncertainty surrounding the origins and 
effects of environmental illness, we instead adopted a 
case-by-case approach.  Research that would help us assess the 
validity of claims for protection under the ADA would be helpful, 
as would information that would allow us to determine what 
modifications would be appropriate in particular cases.

We would also like to see systematic efforts to improve the 
professional training of architects and attorneys in ADA-related 
matters.  Therefore, we would encourage research to support the 
development of ADA-related curricula for use in architecture and 
law schools to raise the ADA literacy level of these two 
professions.

Finally, we would urge continued research in the area of 
assistive technology.  Technologies developed in the past few 
decades have allowed a great many individuals with disabilities 
to independently enter the mainstream of American life.  There is 
still, however, a great deal of work to be done in this area that 
will allow the potential of the ADA to be fulfilled in practical 
ways.

For example, the ADA requires that places of public accommodation 
be accessible to persons with disabilities and that appropriate 
auxiliary aids and services be furnished to ensure equal 
enjoyment.  Yet, for example, persons who are deaf are still 
largely unable to enjoy films shown in movie theaters, because 
effective technology that will allow closed captioning of films, 
as opposed to videotape, is not currently available.  Research to 
develop appropriate technology for this setting would be most 
worthwhile.

Another area of technological research that would directly 
benefit persons with hearing impairments would be the development 
of telecommunication devices for deaf persons (TDDs) that would 
function in outdoor environments.  Currently, because of the lack 
of effective technology, new banks of outdoor public phones, 
including those used in emergency call-box systems, are exempt 
from the requirements that apply to indoor pay phones regarding 
the installation of TDDs.  For a person who is deaf, the absence 
of a TDD may create not only a minor inconvenience, but more 
significantly a major crisis in an emergency situation.

We also have a number of other ideas for research that do not 
fall into any of the categories mentioned thus far.  For example, 
it would be worthwhile for research to systematically document 
the activities of individuals fraudulently holding themselves out 
as ADA experts.  These individuals are playing on the fears of 
small businesses by exaggerating the requirements of the ADA and 
charging exorbitant fees for their advice and materials.  Another 
possible research idea involves monitoring state and local 
government compliance with Title II.  By January 26, 1993, state 
and local governments should have completed both transition plans 
and self-evaluations under ADA Title II regulation.  We would 
suggest that a sample of these documents be reviewed and analyzed 
in order to give us a better idea of the steps being undertaken 
to comply with Title II.  

These suggestions for research are only a few of the many areas 
from which we can directly benefit.  In our zeal to breach new 
frontiers, however, we should be mindful of offering our 
continued support to valuable programs that are currently in 
place.  Our vital technical assistance mechanisms should not be 
neglected.  We should continue to allocate adequate funding 
towards these programs so that they may continue to provide high 
quality information and guidance to individuals with disabilities 
and entities with responsibilities under the ADA.

At this point I would like to recognize one of our partners in 
the technical assistance effort-the National Institute on 
Disability and Rehabilitation Research-and a cohost of this 
conference.  We salute the efforts of our friends Bill Graves and 
Dave Esquith in establishing the ten Regional Technical 
Assistance Centers.  NIDRR has given us full support in our 
governmentwide coordination of federal ADA technical assistance, 
and the Civil Rights Division is pledged to work closely with 
them as we meet future challenges.

Let me turn now to our enforcement efforts under the ADA and give 
you an update as to where we stand.  Our enforcement philosophy 
is clear.  We believe that the ADA is fair and balanced 
legislation.  Attorney
General Bill Barr and the Civil Rights Division are committed to 
enforcing the ADA vigorously, effectively, and fairly.  Our 
compliance strategy is equally clear and is a simple one.  It can 
be summarized in a phrase:  "Educate and negotiate and litigate 
only when compliance is refused."  What this means is that we are 
seeking to promote voluntary compliance with the ADA through an 
active outreach and public education effort.  We will first seek 
to resolve complaints through a process of technical assistance 
and negotiation, and resort to litigation only when these avenues 
have proven unsuccessful.

In terms of our organization, on October 1 we established a new 
section in the Civil Rights Division, the Public Access Section, 
to handle many of our new responsibilities under the ADA.  We 
have also assigned ADA responsibilities to two of our existing 
sections-the Coordination and Review Section and the Employment 
Litigation Section.

The Public Access Section, in its earlier guise as the Office on 
the Americans with Disabilities Act, was responsible for 
developing the Department's regulations under Titles II and III 
of the ADA which, we are very proud to say, were issued on time, 
a rather unusual phenomenon for Washington; thus allowing for the 
full 6-month adjustment period provided by the Act before the 
regulations went into effect.

The Public Access Section is also in charge of the Department's 
Technical Assistance Program, including the administration of 
grants and the coordination of ADA technical assistance 
activities governmentwide.  Under our technical assistance 
program we have produced handbooks, manuals, and factsheets; 
handled thousands of calls to our information line at the rate of 
3,000 a week; provided speakers for hundreds of conferences and 
seminars; and mailed out, literally, millions of documents.  The 
Public Access Section also has responsibility for determining 
whether state and local building codes meet the requirements of 
the ADA and is currently reviewing a number of petitions for 
certification.

Since the January 26 effective date, we have steadily increased 
our staffing for our investigation and enforcement activities.  
The Public Access Section has assumed responsibility for the 
Department's litigation program under Titles II and III and is 
actively pursuing an ever-growing number of complaints.

When the Public Access Section receives a Title III complaint 
against a private entity, our first step is to send an 
acknowledgment to the complainant and notify the facility owner 
and/or operator.  The investigation process is then begun in 
which the complainant is initially asked to provide more specific 
information about the respondent's facility and the alleged 
discrimination.  Respondents are then requested to submit 
information relevant to the complaint.

On-site investigations are frequently necessary, especially when 
issues are raised involving alterations, new construction, or the 
removal of barriers in existing facilities.  In many cases, a 
Public Access Section attorney will be accompanied by one of our 
staff architects who is able to make an expert assessment of the 
compliance problems and what it will take to solve them.  We 
currently have a staff of ten attorneys and two architects 
involved in investigating complaints.  We plan to add additional 
attorneys and architects during this fiscal year.

If, following this initial phase, the Public Access Section 
concludes that there is a violation of the ADA, we will first 
attempt to settle the matter voluntarily-through negotiation.  We 
have found that frequently a problem situation can be resolved 
simply by bringing it to the attention of the owner-operator and 
by providing appropriate technical assistance.  Because the ADA 
is so new, many covered entities simply do not know what the 
requirements are and how to apply them in their particular 
situation.

For me, the most satisfying experience comes from observing how 
successfully many businesses and
governments have often voluntarily complied with and even gone 
beyond the ADA's requirements.  I'm sure many of you have noticed 
new signs in retail shops offering to assist shoppers with 
disabilities and those in hotels directing customers with hearing 
impairments to the nearest TDD.

One of our attorneys, while providing technical assistance to a 
facilities manager in charge of over 60 shopping malls, happened 
to mention that a local mall in her town lacked van- accessible 
parking.  Coincidentally, the mall was one of those owned by the 
manager's company and, soon thereafter, the company decided that 
it was "readily achievable" to provide two new, conveniently 
located van spaces.  The same company has evaluated and improved 
the services it provides to customers with disabilities at all of 
its malls and has designed new brochures to highlight those 
services.  That company obviously recognized the value of 
enhancing the services it provides to its patrons with 
disabilities.

We have also seen similar changes arising out of complaint 
investigations.  For example, we helped to resolve a complaint 
against a private school for planning to hold graduation 
exercises in an inaccessible building.  Our attorney explained 
the ADA's requirements for readily achievable barrier removal, 
surveyed the facility with school officials, identified the 
problems, and came up with practical solutions for resolving 
them, namely, installing a temporary ramp to the graduation hall, 
opening of an otherwise locked accessible restroom on an upper 
floor served by an elevator, and posting appropriate signage 
indicating the accessible route.

In another case we were able to work out, a privately operated 
art academy had refused to provide a sign language interpreter 
for a student who was to attend an intensive weeklong seminar.  
Our attorney brought the ADA's auxiliary aids requirements to the 
school's attention and worked with the school and the complainant 
to determine exactly which sessions of the seminar involved 
complex verbal communication so as to require interpreting 
services.  Once the school did that analysis, it realized that 
the cost of providing an interpreter would not be as high as it 
had feared, because an interpreter was not needed for large 
portions of studio sessions.

Of course, where a voluntary settlement cannot be obtained, the 
Public Access Section is authorized to litigate and we will 
litigate when the path of settlement is rejected.

When an action is brought by the Justice Department under Title 
III, the Department is entitled to seek a court order to stop 
discrimination.  Injunctive relief might include a variety of 
remedies such as requiring a national athletic organization to 
modify its playing ability requirements for applicants for coach 
certification, a hotel to install a permanent ramp to its 
restaurant, a famous folk singer to provide a sign language 
interpreter at a concert, or a supermarket to restripe its 
parking lot to provide adequate accessible parking.  These 
examples are from actual cases that, fortunately, we have been 
able to resolve short of litigation and are just a few 
illustrations of the type of injunctive relief we would seek.

The Department may also seek monetary damages for individual 
victims of discrimination.  Monetary damages may not include 
punitive damages but may include compensatory damages.  In 
addition, in certain cases where we deem it necessary to 
vindicate the public interest, we may seek civil penalties up to 
$50,000 for a first violation and up to $100,000 for any 
subsequent violation.

A different set of procedures applies when we receive complaints 
against state and local governments under Title II of the ADA.  
The ADA specifically provides that Title II is to be enforced in 
accordance with the procedures used to enforce Section 504 of the 
Rehabilitation Act of 1973.  While Section 504 is enforced by 
each of over 25 federal agencies that provide federal grants, 
eight federal agencies, including Justice, have been specifically 
designated to handle the ADA Title II complaints.  Each of the 
designated agencies was chosen because of its central role in 
enforcing Section 504.  The Civil Rights
Division's Coordination and Review Section handles the initial 
administrative investigation and adjudication of Title II 
complaints for which Justice is the designated agency.  Where 
discrimination cannot be resolved through voluntary compliance, 
the case is referred to the Public Access Section for litigation.

Justice is authorized to handle complaints involving law 
enforcement, public safety, corrections, and courts.  The more 
than 350 complaints we have received thus far focus on a broad 
range of issues, including TDD access to 911 emergency systems, 
physical access to municipal buildings, auxiliary aids in court 
proceedings, excessive force in arresting deaf persons, and 
treatment of prisoners with disabilities.

Our emphasis on negotiation and voluntary compliance has enabled 
us to achieve significant relief, even in the absence of formal 
findings of discrimination and litigation.  For example, a 
22-state bar association recently agreed to accommodate an 
individual with a learning disability by providing him with more 
time in which to complete the bar examination based on an 
individualized assessment of the individual's needs; a city 
consented to provide notices of meetings and agendas in formats 
that are readable by individuals with vision impairments; and a 
state prison system agreed to reassign an inmate with mental and 
physical disabilities caused by a traumatic head injury to a 
facility with appropriate medical care for his needs.  

We have referred over 350 complaints involving other categories 
of state and local government activity to the appropriate federal 
agency responsible for that subject matter.  For example, we have 
referred complaints involving access to school libraries and 
auditoriums to the Department of Education, barriers to public 
housing authority rental offices to the Department of Housing and 
Urban Development, lack of accessible hospital parking to the 
Department of Health and Human Services, and failure to provide 
curb cuts to the Department of Transportation.

In processing Title II complaints, the other seven designated 
agencies follow pretty much the same administrative procedures we 
use in investigating Title II complaints for which we are 
responsible.  In other words, each agency investigates, issues 
formal letters of finding of discrimination, seeks voluntary 
compliance, and, if voluntary compliance cannot be achieved, 
refers the case to our Public Access Section for litigation.  

The remedies available in Title II cases are exactly the same as 
those provided by Section 504 of the Rehabilitation Act.  Until 
recently, only some federal circuit courts had granted 
compensatory damages, in addition to injunctive relief, under 
Section 504.  The Supreme Court, however, recently held in 
Franklin v. Gwinnett County Public Schools that compensatory 
damages could be awarded under Title IX of the Education 
Amendments of 1972, which bars sex discrimination in education 
programs receiving federal financial assistance.  We believe that 
since Section 504 was modeled on Title IX, it is likely that all 
circuits will follow the holding in Franklin and will view 
compensatory damages as an appropriate Section 504 remedy, and 
therefore, available under Title II.
Let me note one other aspect of our enforcement program that 
should be of particular interest.  Under Title I of the ADA, the 
employment provisions which are generally enforced by the Equal 
Employment Opportunity Commission (EEOC), the Attorney General 
has litigation authority with respect to complaints against units 
of state and local government.  When EEOC investigates a charge 
against a public entity, makes a reasonable cause finding, and 
fails in its efforts to conciliate, it will then refer the charge 
to the Employment Litigation Section of the Civil Rights 
Division.  That section may then litigate the charge or, in the 
alternative, issue a Right to Sue letter to the complainant.  The 
Employment Litigation Section also exercises the Division's 
independent Title I authority to sue 25 units of state and local 
government that we believe are engaged in a pattern or practice 
of employment discrimination.  

Of course, since the enactment of the Civil Rights Act of 1991, 
the remedies available under Title I have expanded from 
injunctive relief and back pay to include compensatory damages 
that are subject to a floating cap, depending on the number of 
employees.  While punitive damages are available in cases against 
private employers under the 1991 Act, they are not available in 
claims against government agencies.

One additional note on employment:  We are working closely with 
the EEOC to develop a coordination regulation for handling 
employment complaints for which there is overlapping coverage 
under Section 504 or Title II, and Title I of the ADA.  For 
example, a municipal police department that receives federal 
funds for a crime control program would be covered three ways:  
by Title II of the ADA as a "public entity," by Section 504 as a 
recipient of federal financial assistance, and by Title I of the 
ADA as an employer with 25 or more employees.  A final rule 
laying out the ground rules for federal agency handling of 
employment complaints with overlapping coverage will be published 
in the near future.  

The final piece on carrying out our philosophy of "first educate 
and negotiate" is an effective program of technical assistance.  
Providing high-quality technical assistance is critical if we are 
to achieve our goals while keeping costly litigation at a 
minimum.  We have provided over $3.4 million in grant monies to 
19 business and disability advocacy groups to fund projects 
designed to promote voluntary compliance with the ADA.  One of 
our top priorities has been to encourage projects of national 
scope that will enable business, government, and individuals with 
disabilities to work as partners in promoting compliance.  We 
were particularly pleased that, in this year of very tight 
budgets, the Congress, with the strong support of Senators 
Kennedy, Dole, and Harkin, has provided an additional $2,500,000 
in the FY 1993 budget to fund additional technical assistance 
projects.  

Fifteen months after their issuance, our ADA regulations are well 
on their way toward becoming part of the fabric of American life.  
It is gratifying to see the language of the ADA and our 
regulations become part of the common vocabulary of ever-widening 
circles of Americans.  Ideas that seemed novel, or even 
threatening, to many people nearly a year ago are now commonplace 
for growing numbers of decision makers in our public and private 
institutions.

As I mentioned at the outset, we believe that our ADA regulations 
maintain the law's careful balance between protecting the right 
of individuals with disabilities to equal access to the 
mainstream of American life and recognizing the legitimate needs 
of government and business for efficiency and profitability.  
Through the incorporation of limiting concepts such as "readily 
achievable," "undue burden," "reasonable accommodation," and 
"undue hardship," which take into consideration the economic 
health of individual businesses and government units, the ADA 
protects essential rights and, at the same time, promotes 
economic growth.

In the relatively brief period we have been working with this 
revolutionary statute, there is one clear conclusion:  The ADA is 
not a "zero sum game" where one group's gain comes only at the 
expense of another's loss.  Every sector of society will benefit 
from the ADA's swift and effective implementation.  Already, 
there is a growing appreciation, particularly in the private 
sector, not only that it is relatively easy to live with the 
ADA's requirements, but that business opportunities-and 
profits-can be increased by opening the marketplace to 
individuals with disabilities, a large and previously underserved 
group of American consumers.  And in this period of fierce 
international economic competition, we can no longer fail to 
fully tap the employable skills and dedication of millions of 
Americans with disabilities.

Perhaps the most important question in the ADA debate is one that 
often receives the wrong answer:  Just who are the beneficiaries 
of this law?  It is not simply those who use wheelchairs or who 
are blind, deaf, or hard of hearing.  The ADA protects 
individuals with a wide spectrum of disabilities.  But they are 
not
the only beneficiaries of the Act.  All businesses that will now 
be able to employ people with disabilities or sell their products 
or services to them benefit by the ADA.  And there are more:  
Family members and friends of those with disabilities gain by a 
law that brings greater fulfillment and independence to loved 
ones.

And finally, the beneficiaries include all of us-not only because 
it means we will live in a better, more compassionate community.  
We will benefit by the ADA because someday, every person in this 
room may need its protection and its guarantees.  As I have 
learned from my friends in the disability community, the world is 
divided into two groups-those with disabilities and those who are 
temporarily able.  As a result of an accident, a disease, or 
simply the passage of time, anyone may awake one day and realize 
that the ADA now has special meaning to one more individual.  

For that reason, if for no other, I urge you to help spread the 
message:  The ADA is a good law, an essential law, and we must 
all work hard to see it is implemented so that its promise 
becomes a reality for the entire nation.  Thank you.
Session II (Part 1)

Putting Research to Work for the Realization of the Goals of the 
ADA:  The Perspective of the Community of Persons with 
Disabilities
Moderator:  A. Kent Waldrep, Jr., National Council on Disability
Speakers:  
  Simi Litvak, The World Institute on Disability
  Andrew Batavia, Abt Associates
Discussant:  Harlan Hahn, University of Southern California

Mrs. Parrino turned the session over to moderator A. Kent 
Waldrep, Jr., Vice Chairperson of NCD.  Mr. Waldrep introduced 
Dr. Simi Litvak of The World Institute on Disability.

Summary of Dr. Litvak's Paper
Dr. Litvak's paper, "Putting Research to Work for the Realization 
of the Goals of the ADA:  Perspectives of the Disability 
Community," focused on the ambivalence felt by many in the 
disability community about disability-related research.  Dr. 
Litvak examined the reservations the disability community has 
about research and highlighted the use of research in past 
disability policy development.  She discussed the concerns of the 
disability community about the direction that research on the ADA 
should take in its policy implementation stage.  She then focused 
on suggestions for ADA-related research that would be very useful 
during the implementation period.  She concluded with a 
description of outstanding research agenda items regarding policy 
and underserved groups.

Dr. Litvak's Presentation
In presenting her paper, Dr. Litvak summarized the main points, 
concentrating on the need for disability researchers to ask 
questions that are relevant to the lives of people with 
disabilities and to the needs of policy makers.  She 
characterized disability policy researchers as having three main 
tasks:  background research to determine needs, support and 
direction during policy implementation, and outcome evaluation.  
She stated that it is too early to evaluate the merits of the ADA 
at the present time; evaluators should concentrate on how the law 
is being implemented.  She listed a number of areas, such as 
outdated access guidelines, that cause difficulties for those 
seeking to implement as well as enforce the law.

In terms of future research, Dr. Litvak urged that the numerous 
individuals, groups, and interested agencies of the federal 
government work together to fund and generate research that cuts 
across disciplines.  She listed a number of areas-ranging from 
definition of concepts such as "equality," to better 
documentation of the needs of underserved populations, to 
defining the needs of disabled individuals who do not take 
advantage of the ADA-that need further attention from 
researchers.

Mr. Waldrep then introduced Mr. Andrew Batavia of Abt Associates.  

Summary of Mr. Batavia's Paper
Mr. Batavia's paper, The Failure of Disability Policy Research:  
Sources and Solutions, was premised on the notion that disability 
policy research has failed to meet the needs of advocates and 
policy makers for empirically based knowledge to advance the 
disability policy agenda.  It stated that while researchers had 
been effective in identifying problems, they had been less 
effective in analyzing solutions, and that disability policy 
research had been hampered in its efforts by issues of relevance, 
objectivity, competence, and adequacy of resources.

In the paper, Mr. Batavia called for a vitalization of disability 
policy research, both internally and externally.  From within the 
field, the paper stated that researchers must ensure the 
relevance of their
research by incorporating more meaningful and appropriate 
participation of people with disabilities into the research 
process.  Mr. Batavia stated that researchers must ensure the 
objectivity of their research by not confusing the roles and 
objectives of the researcher with those of the advocate.  From 
the outside, with few economic resources available, policy makers 
must be convinced that the field is worthy of investment; policy 
researchers must be persuaded that the field is worthy of their 
efforts.

Mr. Batavia's Presentation
In discussing his paper, Mr. Batavia reiterated the main points, 
focusing on specific examples where the relevance, objectivity, 
competence, and adequacy of resources for disability policy 
research have reduced the overall research effort to "a dismal 
failure."  He stated that the field has not served the needs of 
disability policy and has failed to advance people with 
disabilities to the next stage of the independent living 
movement.  Specifically, with regard to the ADA, Mr. Batavia 
noted that disability researchers could not answer the questions 
of lawmakers.  However, the ADA passed even without documentation 
of need.  No baseline data exist to assess the implementation of 
the ADA.  

In terms of solutions, Mr. Batavia stressed the need to involve 
more persons with disabilities in the disability policy process 
as researchers and peer reviewers.  Separation of the roles of 
researchers, advocates, and policy makers will benefit all.  He 
called on the appropriate public and private institutions to 
invest in both policy and research and to support the publication 
of research conducted under their auspices.

Mr. Waldrep called for questions and comments from the audience.

Discussion
Conference participants began a spirited discussion of Mr. 
Batavia's statement that advocacy conflicts with policy research.  
A point was made that advocacy groups support much of the 
research involving disability policy.  Thus, no research is 
value-free.  Several suggestions for improving the quality of 
disability policy research were made:  (a) advocate after 
conducting research, not before; (b) train more researchers with 
disabilities; (c) take steps to bring disability policy research 
into the mainstream scientific literature, which will necessarily 
dictate the caliber of disability policy research; and (d) 
establish objectivity by truthfully describing research methods 
and assumptions and by separating findings from recommendations.

Individual Breakout Sessions
Individual breakout sessions on Equality of Opportunity, Full 
Participation, Independent Living, and Economic Self-Sufficiency 
followed Session I.  The results of these sessions are found in 
Section II:  Conclusions and Recommendations, Breakout Sessions.
Session II (Part 2)

Putting Research to Work for the Realization of the Goals of the 
ADA:  The Perspective of Minorities and Other Underserved 
Populations
Moderator:  Frederick Bedell, National Council on Disability
Speakers:
  Paul Leung, University of Illinois at Urbana-Champaign
  Sylvia Walker, Howard University
Discussant:  Evelyn Davis, Harlem Hospital

Dr. Fred Bedell, Acting Executive Director of NCD, moderated the 
session.  Dr. Bedell noted that NCD had recently cosponsored a 
conference with Jackson State University, an Historically Black 
College in Jackson, Miss., entitled Meeting the Unique Needs of 
Minorities with Disabilities:  Setting an Agenda for the Future.

Dr. Paul Leung of the University of Illinois at Urbana-Champaign 
then discussed Putting Research to Work for the Realization of 
the Goals of the ADA:  The Perspective of Minorities and Other 
Underserved Populations, a paper that he coauthored with Dr. 
Sylvia Walker.

Summary of Dr. Leung's Paper
In his portion of the paper, Dr. Leung argued that racial/ethnic 
persons with disabilities have often been ignored in disability 
policy research and that little has been done to promote their 
inclusion.  At the same time, racial/ethnic minority populations 
have grown the most during the past decade in the United States.  
He argued that there is an appalling lack of data related to 
racial/ethnic populations with disabilities; data that are 
available were often in a form not usable or not effective for 
the formulation of policy.  In addition, he stated that some of 
the basic assumptions of the ADA may be at odds with the cultural 
value systems of racial/ethnic minority populations.  Increased 
emphasis on disability policy research that targets racial/ethnic 
minority populations with disabilities is necessary.

Dr. Leung's Presentation
In his presentation, Dr. Leung pointed out that the disability 
community has traditionally been led by middle-and upper-income 
whites.  However, factors such as poverty and minority status 
make disability worse.  Lack of data certainly does not indicate 
lack of need.  To effectively measure need in racial/ethnic 
minority communities, methods of data collection may need to 
change to bring in new perspectives and to break down the 
distrust between racial/ethnic minority communities and 
researchers.  Researchers also need to pay more attention to the 
differences among minority subgroups and the lack of data for 
these smaller communities.  Dr. Leung pointed out that 
racial/ethnic minority communities often fail to demand attention 
and services because the mind-set of the individual calling 
attention to a problem is a Western one.

Dr. Sylvia Walker of Howard University spoke next on her paper.

Summary of Dr. Walker's Paper
Dr. Walker's portion of the paper, coauthored with Dr. Leung, 
concerned the growing incidence of disability in racial/ethnic 
minority populations, a growth that occurs in direct proportion 
to increasing poverty among pregnant women.  The increasing 
effects of pediatric Acquired Immunodeficiency Syndrome (AIDS), 
AIDS in adult populations, and an increase in maternal substance 
abuse, particularly crack cocaine, have raised new challenges for 
researchers in the field of disability policy.  Data cited from 
hospitals serving large urban minority populations with severe 
drug use problems indicated that the percentage of 
substance-exposed new births is as high as 40 percent of live 
births.  The long-term effects
of maternal substance abuse on the development of young children 
are unknown.

Dr. Walker's Presentation
In her presentation, Dr. Walker indicated that minorities with 
disabilities earn less and are more likely to be unemployed than 
their majority counterparts.  Ethnic groups are also not 
homogeneous; some groups are overrepresented in disability 
categories.  Further complicating matters, some service providers 
and small business owners in poor minority communities have 
difficulties meeting the needs of persons with disabilities.  
Minority persons with disabilities are not on a level playing 
field with their majority counterparts.  The ADA has promise and 
benefits for the entire society, but they are not being fully 
realized in minority racial/ethnic communities.

Discussant's Comments
Dr. Evelyn Davis of Harlem Hospital discussed her experiences 
serving the minority community in New York City.  She pointed out 
that the developmental difficulties (mild mental retardation, 
autism, etc.) of children born with drug exposure, HIV, and 
alcohol exposure are unexpected disabilities for which service 
providers and educators are unequipped.  These children and their 
parents are not generally individuals who ask for services under 
the ADA.  Thus, the disability community must insist on further 
research in these areas and train researchers to cope with the 
special needs of these populations.

Discussion
Panelists and members of the audience discussed the lack of 
federal funds to assess disability issues affecting minority 
communities.  Dr. Walker noted that data concerning minorities in 
general are not applicable to minorities with disabilities.  Dr. 
Davis reported that she and several colleagues in New York have 
set up a research consortium to develop a clearinghouse for data 
specific to minorities.  She stressed the importance of training 
researchers to elicit data using culturally appropriate 
techniques.

Reports From Breakout Sessions
Moderator:  John A. Gannon, National Council on Disability
Sessions:
  Equality of Opportunity- Andrew Batavia, Facilitator
  Full Participation-Simi Litvak, Facilitator
  Independent Living-David Pfeiffer, Facilitator
  Economic Self-Sufficiency-Paul Leung, Facilitator

A.  Equality of Opportunity
Mr. Andrew Batavia presented a series of transparencies detailing 
the discussion of the Equality of Opportunity Breakout Session.  
The group's discussion fell into six categories:  general issues, 
employment, education, public accommodations, government 
services, and telecommunications.

The group defined a number of general issues that extend across 
the specific areas of employment, education, public 
accommodations, government services, and telecommunications.  
These general issues that affect equality of opportunity include 
access to health care; access to personal assistance services; 
monitoring of compliance with the ADA; defining and achieving 
equality of opportunity; increasing public awareness of the ADA 
and the right to equality of opportunity under the ADA; and the 
need for basic data on equality of opportunity in employment, 
education, etc.

For each of the five remaining categories, the group prioritized 
two issues for future research.

Employment
1.  How have employers responded to the ADA?  Have they 
determined their responsibilities under the
ADA?  How?  How have they responded to those new 
responsibilities?
2.  Identify work disincentives associated with Supplemental 
Security Income (SSI), Social Security Disability Insurance 
(SSDI), and the lack of adequate health insurance for people with 
disabilities.

Education
1.  What are the best models of special education and integration 
of students with disabilities into mainstream classes?
2.  What programs and models work best for the transition from 
school to work?

Public accommodation
1.  Identification of unmet needs.
2.  Determination of the effectiveness of accommodations such as 
architectural modifications.

Government services
1.  How do differing definitions of disability in federal 
programs interact with one another to affect equality of 
opportunity for government services?
2.  How can interpretations of the ADA be coordinated across 
states?

Telecommunications
1.  How do public carriers train personnel to meet standards of 
effective service?
2.  How should systems designers be trained to consider 
accessibility factors?

B.  Full Participation
Dr. Simi Litvak presented transparencies showing highlights from 
the Full Participation breakout session.  

The group felt that any research conducted on full participation 
must consider a number of issues:  
1.  Determine the quality and degree of participation.
2.  Institute freedom of choice in considering participation 
status.
3.  Are separate but equal arrangements truly equal and do they 
allow full participation?
4.  Barriers to participation are multiple-the ADA is only a 
guideline, not a guarantee to full participation.
5.  Barriers to full participation arise if an individual does 
not know what opportunities are available to him or her.
6.  The dissemination of information about the ADA is incomplete, 
meaning that barriers to full participation remain intact for 
individuals who are not familiar with the ADA.
7.  Who makes up the reference group by which full participation 
is judged?  How can participation be evaluated across the 
spectrum of disability?
8.  The current national debate over health care obviously 
affects people with disabilities, and immediate research is 
needed on the effects of the different proposals on people with 
disabilities, particularly proposals for prevention of 
disabilities.
9.  People with disabilities are not isolated from society but 
are a part of the whole, meaning that full participation should 
be considered from both individual and societal perspectives.
10.  All of the goals of the ADA are extremely complex and 
require input from people with disabilities, philosophers, and 
people who study ethical issues using quantitative, qualitative, 
and participatory research methodologies.

C.  Independent Living
Dr. David Pfeiffer of Suffolk University, discussed the findings 
of the Independent Living breakout session.

Dr. Pfeiffer reported that the group had based its discussions on 
the morning conference session.  Group members agreed that the 
disability community and disability researchers are moving from a 
medical paradigm to a disability paradigm.  This movement 
presents an obvious question:  How is research based on this new 
paradigm translated into policy?  

Although group members were not able to answer this overarching 
question, they discussed the advantages and disadvantages of 
quantitative and qualitative methodologies.  The group developed 
two research priorities with respect to independent living:  
1.  Operationalize what "independent living" means and test its 
implications.
2.  Study the implementation of the ADA now and its outcomes 
later.

D.  Economic Self-Sufficiency
Dr. Paul Leung reported on the Economic Self-Sufficiency breakout 
session.
The group defined economic self-sufficiency as follows:
  An individual is economically self-sufficient if that 
individual earns or can earn enough to meet his or her basic life 
needs.  A household is economically self-sufficient if someone in 
that household (or the household collectively) earns enough to 
meet the household's basic needs.

The group then established a number of research priorities in the 
general area of economic self-sufficiency:
1.  Establish the need for baseline national statistics on 
economic self-sufficiency for people with disabilities.
2.  Identify federal agencies that will support such a survey.
3.  For people with disabilities who meet the various federal 
eligibility criteria (such as those for SSI and SSDI), what are 
the factors that separate those who work from those who do not 
work?
4.  Examine upward mobility within jobs for persons with 
disabilities.
5.  Examine the quality of training provided to persons with 
disabilities; determine what works in promoting economic 
self-sufficiency.
6.  Compare lifetime earnings and upward mobility for people with 
various disabilities with those of the general population.
7.  Establish the need for a variety of integrated programs.
8.  Establish the need for more stringent evaluations of programs 
intended to promote economic self-sufficiency among people with 
disabilities; define the success for such programs.
9.  Determine what answers are needed by policy makers.
10.  Extend research to examine economic self-sufficiency issues 
beyond the working age of persons with disabilities.
11.  Document those programs and policies that are effective.
12.  Explore ways to better utilize existing data.

Discussion
The fourth group was urged to add a recommendation to document 
the importance of reasonable accommodation in the workplace in 
enhancing the economic self-sufficiency of workers.

The discussion then turned to the difference between primary and 
secondary disabilities.  Several members of the audience 
discussed the ethical implications of genetic testing and 
prenatal screening for disabilities.  Abortion, suicide, and 
assisted death as ethical and civil rights issues were also 
debated.  Mrs. Parrino stated the position of NCD that abortion 
should not be a form of prevention of disability.
Tuesday, December 8, 1992
Plenary Session
Session III

Shaping an Interdisciplinary Field of Disability Studies 
Responsive to the Goals of the ADA
Moderator:  David Gray, National Center for Medical 
Rehabilitation Research
Speakers:
  Economics-David Dean, University of Richmond
  Engineering-Andrew Schoenberg, University of Utah
  Health-Gerben DeJong, National Rehabilitation Hospital
  Social Policy-Irving K. Zola, Brandeis University
  Vocational Rehabilitation-Susanne M. BruyŠre, Cornell 
University
Discussant:  Mary Chamie, United Nations

Dr. Gray thanked NCD for sponsoring the conference.  He indicated 
that future federal requests for applications and requests for 
proposals grow out of this type of conference.  He commented that 
the disability field needs to collapse across "etiologies" and 
focus on "function."

Economics
Dr. David Dean, University of Richmond
Dr. Dean began by noting that the business community has railed 
against the costs of implementing the ADA.  However, the costs of 
reasonable accommodation may not be that high.  He challenged 
researchers to determine the costs of reasonable accommodation 
and assistive technology to firms, using terms as specific as 
possible.  Case studies at the company level can help determine 
the costs of compliance with the ADA.  Controlled experimentation 
to determine discriminatory hiring practices can be used to 
encourage businesses into complying with the ADA.  In general, 
however, owners may be more likely to comply with the ADA if they 
are convinced that it is in the best interests of their business 
to do so.  One way to do that is to measure reduced costs 
traceable to compliance with the ADA in areas such as lower 
workers' compensation expenditures and reduced long-term 
disability benefits.  Businesses must also be informed of the 
costs of noncompliance with the ADA.  Finally, researchers should 
look at the costs versus benefits of return-to-work programs, the 
estimates of which have been wildly inflated by businesses.

Engineering
Dr. Andrew A. Schoenberg, University of Utah
Rehabilitation engineering is the application of engineering 
principles and technical expertise in the provision of assistive 
technology to help a person with a disability achieve his or her 
functional goals.  There are approximately 500 rehabilitation 
engineers in the United States.  However, Dr. Schoenberg's 
experience in Utah has revealed that the mechanisms that support 
the purchase, servicing, and delivery of assistive technologies 
are very weak.  The engineering profession must reeducate itself 
in light of the ADA.

Reimbursement for rehabilitation engineering services are not 
readily approved by third-party payers, Medicare, or Medicaid.  
The traditional system of "medical necessity," prescription of 
devices by a physician, and delivery of such devices by durable 
medical equipment suppliers is still the predominant paradigm.  
Significant changes in this paradigm will need to be designed if 
assistive technology is to be delivered effectively to reduce 
barriers for employment and integration of persons with 
disabilities into the larger community.

The engineering professions, including rehabilitation 
engineering, will need to increase their awareness,
role, and understanding of the provisions of the ADA and how 
engineering can enhance the lives of people with disabilities.

Dr. Schoenberg also spoke briefly about the employment status of 
persons with disabilities and the impact of the ADA on that 
status.  He noted that 75 percent of people with spinal cord 
injuries are unemployed.  Among the reasons for this high 
unemployment rate are health factors, lack of education, and lack 
of job skills.  Barriers to work and improved living standards 
include lack of assistive technology, and rehabilitation 
engineers can have the most immediate impact in this area.  
Policy barriers to improved employment of people with 
disabilities include the high cost of health insurance (if 
provided at all) for prospective employees.  Additionally, the 
attitudes of employers toward individuals with spinal cord 
injuries are often negative.

Health
Dr. Gerben DeJong, National Rehabilitation Hospital Research 
Center
Dr. DeJong noted that the disability community's historical 
aversion to the medical model has meant that, until recently, the 
community has not viewed health care as an important policy area.  
Within health care, each health discipline views people with 
disabilities differently and seeks to achieve somewhat different 
outcomes.  However, health care issues ranging from insurance to 
overall systemic reform have direct implications for people with 
disabilities and are affected by the ADA.

Dr. DeJong's outline listed a number of concrete steps that could 
be taken to develop such a research capacity.  Dr. DeJong 
stressed that resources and leadership are needed from a whole 
range of public and private groups, including the federal 
government, the academic community, and the disability community.

Social Policy
Dr. Irving K. Zola, Brandeis University
Dr. Zola discussed the evolution of disability studies within the 
discipline of sociology.  For many years, the dominant 
theoretical model for disability was a biomedical model that 
focused on acute illness.  During the 1970s and 1980s, the field 
of disability studies gradually evolved into its own discipline, 
formed by the work of activists in a number of fields, including 
the independent living movement and feminism.  In the 1990s, 
disability studies are again undergoing transformation.  Should 
they be combined as a field?  If so, how?  This discussion is 
analogous to the debate on forming a separate women's health 
discipline.  People who are involved in disability studies 
continue to debate the issue.

Vocational Rehabilitation
Dr. Susanne BruyŠre, Cornell University
Dr. BruyŠre reviewed the current relationship between vocational 
rehabilitation and disability policy research, including existing 
vocational rehabilitation service delivery and personnel 
categories, personnel education and training structures, and 
social policy interests with respect to vocational 
rehabilitation.  She then discussed the implications of the ADA 
for vocational rehabilitation service delivery, personnel 
structure, personnel education and training, and research.  In 
general, the ADA has facilitated greater attention to and 
augmentation of these fields.

Dr. BruyŠre pointed out that professionals in the field of 
vocational rehabilitation have traditionally seen themselves as 
helpers or experts in the delivery of services; that perspective 
needs to shift to the empowerment model.  Better interfaces are 
needed between the vocational rehabilitation community and other 
groups, such as medical professionals, businesses, researchers, 
and the community at large.  Interdisciplinary interfaces are 
needed in areas such as economics, engineering, health, and 
social policy.  Dr. BruyŠre enumerated a number of steps to 
develop disability research in vocational rehabilitation and 
discussed the resources needed to support these steps.

Discussant's Comments
Dr. Mary Chamie, United Nations, proposed two rules for 
interdisciplinary research:  (a) establish full exchange across 
the disciplines, and (b) include measures that ensure that the 
research is fully interdisciplinary, such as internships that 
allow individuals from one discipline to share the activities of 
another.  With regard to controlled experimentation in the 
disability field, Dr. Chamie suggested that researchers should 
also consider controlling the environment (width of doors, height 
of steps, etc.) in any experiment, not just the participants.

Discussion
In discussing the presentations, members of the audience debated 
the need for one or more interdisciplinary disability policy 
research institutes.  Participants indicated that, without an 
entity that can provide quick turnaround on research, all people 
with disabilities will not be able to effectively lobby policy 
makers.  Several individuals argued that there should not be one 
single voice speaking for all people with disabilities.  The 
centralization of research funding, rather than centralization of 
research, was also suggested.

Several members of the audience submitted suggestions for 
additional research.  One example of these was in the field of 
life insurance, specifically, the costs of and barriers to 
acquiring life insurance for persons with disabilities.

Session IV

Strategies for Adopting Common Nomenclature That Is Responsive to 
the Goals of the ADA:  National and International Experiences
Moderator:  Gerry Hendershot, National Center for Health 
Statistics
Speakers:
  Michel Thuriaux, World Health Organization
  William Frey, Disability Research Systems, Inc.
Discussants:
  Adele Furrie, Post Censal Surveys Statistics, Canada
  Donald Patrick, University of Washington

Dr. Gerry E. Hendershot, National Center for Health Statistics
Dr. Hendershot spoke briefly about the importance of terminology 
and the need to reach consensus on terms that are central to 
advancing disability research.  He then introduced Dr. Michel 
Thuriaux, Division of Epidemiological Surveillance and Health 
Situation and Trend Assessment, World Health Organization (WHO); 
Dr. William D. Frey, President, Disability Research Systems, 
Inc.; Adele Furrie, Statistics Canada; and Dr. Donald L. Patrick, 
University of Washington.

Summary of Dr. Thuriaux's Paper
Dr. Thuriaux's paper, Relevance of an International 
Classification System for the Realization of the Goals of the 
ADA, concerned the International Classification of Impairments, 
Disabilities, and Handicaps (ICIDH) currently being used by WHO 
for disability-related research.  In the paper, Dr. Thuriaux 
argued that an international classification system can help 
identify the conditions and circumstances that may foster 
discrimination against people with disabilities, both at the 
individual level and at the level of the interaction between the 
individual and society.  Additionally, such a classification 
system demonstrates the interaction of individual characteristics 
with constraints linked to the societal and physical environment 
in the development of the "handicapping" process.  Careful use of 
an agreed-upon nomenclature will help the international community 
better address the increasing issues of disability.  Dr. 
Thuriaux's paper also illustrates ways in which ICIDH addresses 
the various goals of the ADA.  Dr. Thuriaux discusses the 
limitations of ICIDH, as well as current proposals for its 
revision.

Dr. Thuriaux's Presentation
In his presentation, Dr. Thuriaux reiterated the main points of 
his paper.  He stressed that the structure of the "handicap" 
classification is radically different from all other 
ICIDH-related classifications.  The items are not classified 
according to individuals or their attributes but rather according 
to the circumstances in which persons with disabilities are 
likely to find themselves, circumstances that can be expected to 
place such individuals at a disadvantage.

Dr. Thuriaux asked the audience to consider what might be an 
appropriate English-language umbrella term to cover the overall 
spectrum of experiences associated with impairment, disability, 
and handicap.

Summary of Dr. Frey's Paper
Dr. Frey's paper, Nomenclature Which Is Specific to the Goals of 
the Americans with Disabilities Act, further clarified the 
relevance of the concept "handicap" to the ADA.  Dr. Frey then 
turned to his experiences in applying the concept of "handicap" 
to the design of expected outcomes of education for students with 
disabilities.  The paper briefly describes the disablement 
process as proposed by WHO; discussed problems in the 
organization of special education and rehabilitation services 
arising from a preoccupation with physical and mental impairments 
in the individual; described the application of the ICIDH 
framework to the development of expected educational outcomes for 
students with disabilities;
and discussed a number of the issues that are important for the 
development of policy associated with the ADA and related 
legislation.

Dr. Frey's Presentation
In his presentation, Dr. Frey stressed the importance of the term 
"handicap," which is used within ICIDH to describe the experience 
faced by people with injuries, disorders, or diseases.  He argued 
that the ICIDH usage of "handicap" supports the goals and intent 
of the ADA.  Dr. Frey insisted that agreement on terminology and 
on a model of disablement will lead to better data collection, 
which will in turn affect the adoption of policies concerning 
persons with disabilities.  Despite its faults, the ICIDH can 
provide such a unifying terminology and model for disability 
researchers, one that is in tune with the goals of the ADA.

Dr. Frey also touched upon his experiences using a model based on 
the ICIDH to evaluate special education services in Michigan 
schools.  Dr. Frey's model includes definitions of desired adult 
living roles and generic outcomes for students with disabilities.  
The emphasis of the model is on process rather than outcomes.

Discussants' Comments
Ms. Adele Furrie, of Post Censal Surveys, Statistics Canada, 
began her comments by insisting that using a common nomenclature 
directed toward a common goal is essential to making the various 
pieces of research fit together, particularly in times of fiscal 
restraint.  Ms. Furrie highlighted examples in the papers of Drs. 
Thuriaux and Frey that show the viability of ICIDH in conducting 
such research.

Ms. Furrie then discussed her experiences with Post Censal 
Surveys, Statistics Canada in developing a comprehensive database 
to quantify the barriers faced daily by persons with 
disabilities.  ICIDH was chosen as the framework for three major 
national surveys in which its concepts were operationalized and 
made relevant to members of the public.  For two groups in 
particular-children and persons with disabilities in the area of 
mental health-the ICIDH model proved insufficient.  Statistics 
Canada turned to advocacy groups for assistance in these two 
areas, assistance that extended into advocacy for funding the 
second and third stages of the research.

Canada's comprehensive national strategy for persons with 
disabilities encompasses areas addressed by the ADA.  All 
research activities funded by the Canadian government use the 
ICIDH definition of disability.  The Canadian experience 
validates the use of ICIDH, with operational modifications, as a 
model for policy research.  

Dr. Hendershot commented that there has been no U.S. survey on 
disability since 1981.
Dr. Donald Patrick agreed with the other panelists that the 
choice of common research terms is important.  However, ICIDH is 
only one way to look at the experiences of people with 
disabilities.  ICIDH must be put within the context of prevention 
strategies that work at more than the disablement process in 
areas such as environmental interventions; that adopt a complete 
life course expectancy from infancy to older adulthood; that 
include developmental disabilities, injury-related disabilities, 
and chronic conditions; and that focus on the improvement of 
quality of life as defined by society at large and by persons 
with disabilities in particular.  

With regard to the ADA, Dr. Patrick contended that discrimination 
is only one source of disadvantage; questions of equity and 
equality are at the root of disability policy research.  A strong 
need exists for local, area-based studies like those sponsored by 
the National Institute for Mental Health in the field of mental 
health.

Discussion
Members of the audience discussed the need to agree on terms and 
the challenges involved in reaching agreement.  It was suggested 
that persons with disabilities should be asked to define 
nomenclature describing their disabilities (if indeed broad 
categories should be defined).  It was suggested that disability 
is a process that should be given an umbrella term such as 
"disablement."  On the other hand, it was argued that 
"disablement" may be too broad a term for researchers to use in a 
meaningful way; being disabled involves a number of differing 
planes of experience that should not be confined under one term.

With regard to the overlap between the categories of ICIDH and 
the goals of the ADA, it was suggested that "handicap," as used 
in ICIDH, is insufficient to represent the goals of the ADA; the 
role of the social environment in contributing to disadvantage 
was reiterated, as was the need to include quality of life 
concerns.  The pejorative connotations of "handicap" in American 
usage were mentioned.

Individual Breakout Sessions
Individual breakout sessions on Issues Related to Special 
Populations, Emerging Issues, Building a Disability Study 
Discipline, and Creating a Common Nomenclature and Classification 
were conducted.  Please consult Section II:  Conclusions and 
Recommendations, Breakout Sessions.
Session V (Part I)

Research Strategies for Statistics:  Survey Data and Quantitative 
Research
Moderator:  Scott Campbell Brown, Department of Education
Speakers:
  Lois M. Verbrugge, University of Michigan
  Michelle Adler, Department of Health and Human Services
Discussants:
  Mary Chamie, United Nations
  Michael Adams, Centers for Disease Control

Dr. Scott Campbell Brown, U.S. Department of Education, 
introduced Dr. Lois Verbrugge, University of Michigan, and Ms. 
Michelle Adler, U.S. Department of Health and Human Services.

Summary of Dr. Verbrugge's Paper
Dr. Verbrugge's paper, Survey Research on Disability:  Its 
Relevance for the ADA, gave an overview of disability and 
stressed the diversity of the disability experience.  The paper 
covered five broad topics:  a perspective on disability that 
utilizes good research; key information that researchers should 
have about disability in the U.S. population; how effectively 
surveys can report the progress of the ADA; essential 
developments in data management for better disability statistics; 
and the federal government's role in production of disability 
statistics and generation of scientific research.  The paper 
closed with five specific recommendations for quantitative 
researchers.

Dr. Verbrugge's Presentation
Dr. Verbrugge's presentation echoed the main points of her paper.  
She characterized disability as a type of relationship between a 
person and his or her environment.  Disability occurs when a gap 
opens between personal capability and an activity's physical and 
mental demands.  Disability can be alleviated either by 
increasing capability or reducing demand.

Dr. Verbrugge's five recommendations for researchers included 
calling for clarity (although not necessarily uniformity) in 
scientific terminology; illuminating the disablement process, 
across all ages and conditions, so as to learn about 
interventions that work; recognizing that population surveys 
cannot directly reveal the ADA's success but can help track the 
course and nature of disability in the population; and measuring 
the disability experience on its own terms and at its own pace, 
using appropriate language and receiving input from the community 
of persons with disabilities.  Dr. Verbrugge urged that the 
federal government take principal responsibility for generating 
large-scale disability surveys and for providing funds for 
analysis.

Summary of Ms. Adler's Paper
Ms. Adler's paper, Federal Disability Data:  Creating a Structure 
in the 1990s to Further the Goals of the ADA, placed the ADA in 
the context of other landmark pieces of civil rights legislation 
in the 20th century.  While legislation such as the Social 
Security Act of 1935 can be evaluated according to a statistical 
structure to measure its progress and effects, no similar 
statistical structure exists to describe the role of disability 
in American society.  The paper examined how federal disability 
data in the 1990s can be structured to be useful in policy 
debates that will further the goals of the ADA.
Ms. Adler's Presentation
In her remarks, Ms. Adler argued that a broad array of data are 
needed to evaluate the various federal programs serving the needs 
of persons with disabilities-almost 40 million Americans.  None 
of the existing major federal surveys are specifically targeted 
toward understanding or documenting disability.  Among the 
options available to provide data about disability are the Year 
2000 Decennial Census, the
Survey of Income and Program Participation, the Current 
Population Survey, and the National Health Interview Survey 
(NHIS).  The 1994/95 Disability Survey, a supplement to NHIS, is 
the most ambitious and most promising source of disability data, 
although it has not yet been completely funded, nor will it begin 
until January 1994.

Discussants' Comments
Dr. Brown then introduced Drs. Michael Adams, Centers for Disease 
Control, and Mary Chamie, United Nations, who discussed the two 
presentations.

Dr. Adams divided conference presentations into two broad 
categories:  research regarding the goals of the ADA (represented 
by Dr. Verbrugge), and a national scorecard on the outcomes of 
the ADA (represented by Ms. Adler).  Dr. Adams confined his 
remarks to the ADA scorecard.

With regard to the scorecard, Dr. Adams urged that evaluators not 
wait until the "ideal" evaluation is designed.  Researchers must 
use the best available measures to begin evaluating progress 
toward the four major goals of the ADA.  Although the data sets 
mentioned by Ms. Adler are not ideal, they can help researchers 
determine the status of the community of persons with 
disabilities in light of the ADA and uncover possible 
shortcomings.  In this regard, securing funds for the 1993/94 
Disability Survey is particularly important.  It would also make 
sense for the United States to plug into the momentum already 
achieved by the ICIDH in Europe.

Dr. Chamie noted that the common goal of standards for disability 
data collection challenges countries and/or organizations to 
clearly state their objectives and to acknowledge the underlying 
policies that drive their disability statistics programs.  Few 
international guidelines or recommendations exist in this area.  
Current international analysis of socioeconomic characteristics 
of persons with disabilities indicates that even though the way 
in which countries measure educational attainment-or economic 
activity or marital status-is quite similar, the educational and 
occupational data on persons with disabilities cannot always be 
readily compared due to strong differences in the way people with 
disabilities have been defined across programs of education, 
social welfare, and health.  She noted that such findings 
underscore the necessity of international guidelines and survey 
standards of data collection on disability so that rates may be 
more comparable and more meaningful, both within and across 
countries.

A major international event affecting survey and program planning 
has been the United Nations World Programme of Action Concerning 
Disabled Persons (WPA) adopted by the United Nations General 
Assembly at its 37th session in 1982 (Resolution 37/52).  The 
purpose of the WPA is to promote effective measures for 
prevention of disability, rehabilitation and realization of the 
goals of full participation of persons with disabilities in 
social life, and development of equality.  The major areas of 
action addressing these goals were viewed as prevention, 
rehabilitation, and equal opportunity.  At the same time that the 
WPA was being formulated by the United Nations, the World Health 
Organization was preparing the trial ICIDH (WHO 1981).  The broad 
concepts of the ICIDH were recognized by the drafters of the WPA 
and were included in its goals for improvement in the concepts 
and language for describing people who have impairments, 
disabilities, or handicaps.

Governments and countries that have referred to the WPA and who 
recognized the language of the ICIDH, generally propose the 
following concepts and topics be included when designing their 
program planning:  (a) impairments for the study of prevention; 
(b) disability for planning programs in rehabilitation; and (c) 
handicap for assessing human rights and equalization of 
opportunity.  Dr. Chamie stated that regional, and even national 
comparisons of disability rates may be misleading unless the 
methodological and conceptual differences between data collection 
systems are taken into account.

Discussion
Conference participants discussed the efficacy of national 
population-based surveys.  One of the advantages of such surveys 
is their ability to measure the ICIDH concepts of "impairment" 
and "handicap" (that is, the interaction of the individual with 
the environment).  Other data collection strategies can be used 
to measure the community structure itself, thus providing a 
complementary perspective.

The disability community was urged to move beyond the previous 
day's debate about prevention and adopt the WPA usage of 
prevention as it relates to impairment, disabilities, and 
handicaps.  Currently, the community of persons with disabilities 
is underrepresented in the goals of Healthy People 2000 precisely 
because the baseline data are inadequate for setting such 
prevention goals.

Conference participants reemphasized the importance of 
documenting the effects of legislative endeavors such as the ADA.  
Dr. Chamie presented information showing that the number of 
national population-based surveys and censuses that asked 
questions about disability increased dramatically during the 
United Nations' Decade of Disabled Persons.
Session V (Part 2)

Research Strategies for Statistics:  Survey Data and Qualitative 
Research
Moderator:  Mary Raether, National Council on Disability
Speaker:  Carol Howland, Baylor College of Medicine
Discussants:
  Barbara Altman, Agency for Health Care Policy Research
  Nora Groce, Yale University

Mary Raether, Member, NCD, introduced Carol Howland, Baylor 
College of Medicine, who presented a paper written by Dr. 
Margaret A. Nosek, who was unable to attend.

Summary of Dr. Nosek's Paper
Dr. Nosek's paper, Research Strategies for Statistics, Survey 
Data, and Qualitative Research, argues that the particular 
strength of qualitative research lies in identifying 
interrelationships among factors and themes that underlie an 
issue.  She states that qualitative techniques can be extremely 
useful in examining the impact of disability policy and assessing 
the degree to which the four broad goals of the ADA are being 
met.  Qualitative approaches can adequately address the 
complexity and seriousness of minority and cultural issues in 
disability policy.  Qualitative research is particularly well 
suited for persons with disabilities who are trained researchers 
because it relies heavily on the inductive and intuitive 
abilities of the researcher.  Finally, qualitative techniques are 
invaluable in determining the appropriate questions to ask in 
assessing the effectiveness of disability policy.

Discussants' Comments
Dr. Barbara Altman, U.S. Agency for Health Care Policy and 
Research, who discussed Dr. Nosek's paper, addressed the tensions 
between researchers advocating quantitative and qualitative 
approaches, and made several comments on other topics.

Summarizing Dr. Nosek's paper, Dr. Altman pointed out that 
qualitative methods are quite useful in policy research and 
evaluation.  She commented that she would like to see the concept 
of consumer choice more fully examined by qualitative techniques, 
both within the community of persons with disabilities and in 
comparison with individuals who are not currently disabled.  
Qualitative research can also help inform the debate on defining 
disability nomenclature, incorporating concepts such as "role 
loss" and the impact of the environment in changing personal and 
social circumstances.

Dr. Altman expressed concern about Dr. Nosek's selection of 
subjects for qualitative research in disability.  She pointed out 
that "captive audiences" of individuals with disabilities in 
homes or centers who are easy to study do not provide a balanced 
picture of the community of persons with disabilities.  Dr. 
Altman agreed with Dr. Nosek that qualitative and quantitative 
research techniques should not be seen as competitors but as 
complementary entities.  Qualitative research provides depth, 
whereas quantitative research provides breadth.  When used in 
tandem (for example, the use of qualitative techniques to design 
questions used in quantitative surveys), the effect is greater.

On the much broader topic of disability research as a whole, Dr. 
Altman urged that the field of disability research continue to 
reach beyond health concerns to include other disciplines.  At 
the same time, she stressed the need for an entity (perhaps NCD, 
perhaps other bodies) to bring resources and people together and 
disseminate results more effectively.

Dr. Nora Groce, Yale University, affirmed the idea of combining 
qualitative and quantitative research.  Too often, strictly 
quantitative surveys have little relevance to the lives of 
persons with disabilities or to
policy makers.  All disability researchers should ask themselves 
two questions:
1.  What do we need to know about the individual and the 
individual in the community to design workable programs?
2.  How do we communicate those findings to policy makers, 
advocates, and professional groups?

The field of disability research retains a number of culturally 
based assumptions, such as the debate over terminology.  The 
quest to find one term that covers the variety of experiences 
involved in disability does not occur in some other languages and 
cultures.  Indeed, no single word for disability may exist.  
Language itself changes.  Any term chosen to describe disability 
becomes pejorative after a 10- to 15-year time lag.  The issue, 
then, should not be continual reinvention of terms but education 
of society.

Historically, research on disability has been focused on the 
individual.  A tremendous need has arisen to look at social, 
economic, cultural, and community factors, not just at the 
individual as an isolated consumer.  

Furthermore, cultural and racial subgroups vary greatly within 
themselves.  Relevant data for all groups are needed as a prelude 
to designing relevant, appropriate programs.

Qualitative research has existed a long time and does not have to 
be reinvented.  One real strength of qualitative research is its 
long tradition of defining issues upwards from the grass roots.  
Of course, no program or policy will suit all individuals.  
Greater flexibility must be built into research models as well as 
into policies and programs.  Researchers working in the 
disability field must insist on diversity, both as researchers 
and as policy makers.

Discussion
Conference participants discussed the need to combine qualitative 
and quantitative research methods.  The combined methods can be 
used to measure complex concepts such as change resulting from 
implementation of the ADA.  Purely quantitative analyses that 
attempts to measure the impact of the ADA might well show greater 
dissatisfaction; qualitative techniques might provide the 
explanation for that dissatisfaction (For example, increased 
expectations caused by the passage of the ADA).  However, very 
little funding is available for strictly qualitative research.  A 
possible remedy for this situation is the design of truly 
interdisciplinary research at the university level that 
incorporates these and other relevant methods.
Wednesday, December 9, 1992
Plenary Session
Session VI

Research Strategies for Monitoring the ADA
Moderator:  Raymond Seltser, Agency for Health Care Policy and 
Research
Speaker:  Mitchell LaPlante, University of California at San 
Francisco
Discussants:
  David Pfeiffer, Suffolk University
  Carolyn L. Feis, General Accounting Office
  Jane West, Jane West & Associates

Dr. Raymond Seltser, Agency for Health Care Policy and Research, 
Public Health Service, chaired the session.  Dr. Seltser 
introduced Dr. Mitchell LaPlante from the University of 
California at San Francisco.

Summary of Dr. LaPlante's Paper
Dr. LaPlante's paper, Assessing the Impact of the Americans with 
Disabilities Act, discussed strategies for assessing the ADA and 
focused on national statistical resources.  Dr. LaPlante 
addressed the data and indicators that are available and 
appropriate in assessing the population targeted by the ADA (36.1 
million Americans are limited in activity by physical or mental 
impairment) and the goals of the ADA.  The paper listed a variety 
of operationally defined measures tied to each of the ADA's four 
goals that can be used to measure the ADA's impact over time.  
Dr. LaPlante also suggested several hypotheses about the 
potential impact of the ADA and ways to document them, including 
the Current Population Survey and the Survey of Income and 
Program Participation.  The paper closed with three broad 
recommendations for current and future data collection.

Dr. LaPlante's Presentation
In his presentation, Dr. LaPlante reiterated the main points of 
his paper.  For purposes of evaluation, the ADA's goals must be 
operationalized and then measured.  Dr. LaPlante postulated three 
hypotheses about the potential impact of the ADA:  (a) the 
percentage of the working-age population with impairments who are 
prevented from working should decrease considerably; (b) the 
job-seeking process should become less onerous to people with 
disabilities who are not working; and (c) earnings for people 
with disabilities should improve.  Data are needed to measure 
these trends.

National and subnational trend data on rates of disability and 
the economic situation of people with disabilities must continue 
to be collected, analyzed, and disseminated.  Dr. LaPlante 
reiterated his three recommendations for current and future data 
collection efforts:  (a) all federal statistical agencies should 
incorporate disability measurement into data collection efforts; 
(b) statistical reports should tabulate information by disability 
status, where feasible; and (c) the feasibility of a national 
disability survey should be considered.  In the immediate future, 
the 1993-94 National Health Interview Survey disability 
supplement should be funded.  Congressional appropriations should 
be sought to fund ongoing collection of disability statistics.

Discussants' Comments
Dr. Seltser then introduced the three discussants, starting with 
Dr. David Pfeiffer of Suffolk University.  Dr. Pfeiffer commended 
Dr. LaPlante for his analysis of the ADA as social legislation 
with an emphasis on affirmative action and equality of 
opportunity.  However, he disputed Dr. LaPlante's assertion that 
the population of people with disabilities is well defined.  
Furthermore, existing data sets and nomenclature are seriously 
flawed, a problem not unique to disability statistics.  

Dr. Pfeiffer then turned to the issue of the ICIDH.  He 
criticized the ICIDH on three counts:  (a) the offensive term 
"handicapped" does not appear in the ADA; (b) the ICIDH concerns 
the diagnosis of disease or illness (which puts the onus of 
disability on the individual rather than on society), while the 
ADA is civil rights legislation; and (c) the WHO classifications 
used in the ICIDH are demeaning, paternalistic, and misleading in 
their emphasis on departure from the "normal."  Disability should 
be defined on a case-by-case basis because discrimination occurs 
on a case-by-case basis.  The ADA is civil rights legislation and 
should not be limited by irrelevant definitions.

Dr. Seltser commented that the ADA represents legislation 
designed to prevent disadvantage, not to prevent impairment.

Dr. Carolyn L. Feis, U.S. General Accounting Office (GAO), 
challenged conference attendees to move beyond current sources of 
information and data collection systems to redefine the type of 
data that can be obtained.  Dr. Feis argued that it is not too 
early to evaluate the impact of the ADA.  Not all the goals of 
the ADA are years away from achievement, nor are all new ways of 
evaluating the ADA years from realization.

With regard to the issue of inadequate baseline data, Dr. Feis 
argued that some data do exist.  However, existing data can be 
misleading if appropriate analysis is not made.  For instance, 
the cost of reasonable accommodation is extremely difficult to 
quantify.  Using the example of a power-assisted door, Dr. Feis 
listed a number of different factors not related to the 
accessibility of the doors, which may nevertheless affect the 
cost.  She urged researchers to examine all cost data very 
carefully.  Dr. Feis also argued that baseline data are not 
needed in areas such as employment discrimination because such 
discrimination is illegal; thus, measuring levels of 
discrimination is an academic exercise.

Dr. Feis reported that the GAO is currently researching one major 
goal of the ADA:  barrier removal.  With regard to architectural 
barriers, GAO is conducting ongoing research that involves people 
with disabilities and utilizing the perspective of individual 
interactions with the environment.  GAO will, in the near future, 
begin research on employment discrimination.  With regard to the 
ADA's requirements under Title I, GAO's scope and methods have 
yet to be determined.  This work could focus on any one of 
several areas:  (a) hiring; (b) accommodations made in the 
workplace; (c) appropriateness or inappropriateness of dismissals 
of individuals with disabilities; (d) salary differentials and 
advancement opportunities in employment, all of which follow the 
EEOC complaint path; or (e) a number of other possibilities.

Dr. Jane West, of Jane West & Associates, reminded conference 
participants that the ADA is a civil rights law rather than an 
entitlement program.  With regard to Dr. LaPlante's paper, Dr. 
West commented that the employment rate of people with 
disabilities has limited utility as a proxy measure for the 
effectiveness of the ADA because so many other factors 
(availability of health insurance, educational levels, recession, 
etc.) influence the employment status of people with 
disabilities.  Furthermore, researchers should not allow the four 
goals stated in the ADA's preamble to obscure the purpose of the 
ADA:  ending discrimination.

Dr. West then turned to the question of what influence research 
has on policy.  According to Dr. West's research, staff members, 
other policy makers, lobbying groups, and personal experience 
have the most influence on policy makers.  The GAO, the Office of 
Technology Assessment, and the Congressional Research Service are 
the primary research resources for policy makers in Washington, 
DC.  Social science researchers have played a minimal role in 
influencing disability policy.  Disability policy researchers are 
obliged to think harder about answering the questions for which 
policy makers need answers.

Dr. West noted that the single most influential piece of 
disability-related research in recent years was the Harris Poll.  
What lessons are to be learned from this?  The poll was 
commissioned by a public-private partnership.  Its design allowed 
people with disabilities to speak directly to policy makers in a 
way that policy makers could understand.  Dr. West urged that the 
research community invest the time to structure a dialogue with 
policy makers.  The interaction between interest groups and 
policy research may need to be strengthened.

Dr. West recommended that the federal government provide the 
impetus for relevant disability policy research.  That impetus 
should not be associated with just one discipline (health, 
education, rehabilitation, etc.).  The impetus should be broad 
enough to cover the many areas that impact on disability.

Dr. Seltser criticized the academic community for failing to 
produce policy-relevant research.  He noted that a tremendous 
research potential is available to meet the needs of the federal 
government if its existence can be communicated to policy makers.  
The goals of the ADA need to be utilized to provide functional 
measures that look at disability not as an impairment but as a 
functional state.  Adoption of the ICIDH classification system 
would allow American researchers to take advantage of research 
and policy advances already occurring in Europe and other places.  
The American disability policy field must move beyond the 
nomenclature dispute and provide research that is both 
communicable and relevant to policy makers.

Discussion
Participants and panelists debated the question of what 
constitutes relevant policy research.  The suggestion was posed 
that the dissemination of research results can take a long time 
but that results eventually reach policy makers.  On the other 
hand, research results often appear in inaccessible formats that 
policy makers and their staffs are unable to interpret.  Interest 
groups often provide the translation of relevant research into 
the political process.  This link requires further development.

The group briefly discussed the issue of affirmative action.  Dr. 
Feis commented that the ADA only speaks to discrimination among 
"equally qualified" persons.  

Dr. Pfeiffer commented that the disability research community 
does indeed have a common language with policy makers, and that 
it is not the ICIDH.  He stated that using the ICIDH is 
self-serving for the medical and health fields because it 
supports a poor paradigm and crude model.  Other participants, 
arguing that the reaction of some in the disability community to 
terminology used in the ICIDH blinds them to the value of the 
ICIDH model, took issue with this contention.

Reports From Breakout Sessions
Moderator:  Harlan Hahn, University of Southern California
Sessions:
  Issues Related to Special Populations-Sylvia Walker, 
Facilitator
  Emerging Issues-Mitchell LaPlante, Facilitator
  Building a Disability Studies Discipline-Irving K. Zola, 
Facilitator
  Creating a Common Nomenclature and Classification-Scott 
Campbell Brown, Facilitator

Dr. Harlan Hahn from the University of Southern California 
invited reports from the previous day's breakout sessions.  Dr. 
Hahn introduced the breakout facilitators, beginning with Dr. 
Sylvia Walker, who led the session on Issues Related to Special 
Populations.  

A.  Issues Related to Special Populations
Dr. Walker reported that the group began its discussions with an 
overview of the Monday afternoon
conference session regarding the implementation of the ADA from 
the perspective of minorities with disabilities.

At-Risk Populations
The group identified seven at-risk populations:  low-income 
families, young black males (13-18 years old) with disabilities 
(for example, youth who are learning disabled or mentally ill), 
individuals with psychiatric disabilities, individuals whose 
primary language is not English, individuals with HIV/AIDS, 
Native Americans and Alaska Natives (excluded from the ADA 
because of tribal sovereignty), and recent immigrants who do not 
speak English.

The group listed a number of strategies for researchers 
interested in at-risk populations:
1.  Do not assume that nothing has been done by the target group.  
At-risk populations are often perceived to have nothing to offer.
2.  Ensure that the dissemination of research results/outcomes 
can be translated into action steps that can benefit the target 
community.
3.  Make sure that the research is done in a culturally sensitive 
manner.
4.  Analyses are often erroneous.  The target group should be 
involved in the design, implementation, analysis, and 
dissemination of the research.

Discrimination
With regard to discrimination, the group identified a number of 
issues that affect special populations:
1.  The stigma of socially unacceptable behavior causes 
discrimination.
2.  The general population tends to generalize about disability 
and its impact.  People with disabilities in various disability 
groups are often viewed as homogeneous; very little respect is 
granted for individual differences and individual capabilities.
3.  There is a risk of "tokenism" being applied to persons with 
disabilities.
4.  Greater value is placed on research done by members of the 
majority culture, a group that tends to receive the largest 
amount of funding, the best training, and the most attention from 
publications.  More effort must be made to involve special 
populations in research.
5.  Bias occurs-do not listen to what is being said, but rather 
who is saying it.
6.  The vocational rehabilitation system does not code AIDS as a 
disability, thus creating a barrier to service for persons with 
AIDS.

Research strategies in the area of discrimination include the 
following items:
1.  Establish varying forums for the dissemination of research 
done by minority researchers.
2.  Establish that all funding should meet strict criteria that 
demonstrate the inclusion of women and special populations and in 
particular the community upon which the research is focused.
3.  Funding sources should follow up to ensure that criteria are 
being met.
All research must respect cultural values and strive for more 
inclusiveness in the research process and its outcomes.

B.  Emerging Issues
Dr. Mitchell LaPlante discussed the activities of the breakout 
session on Emerging Issues (personal assistance services, health 
insurance, assistive technology, etc.).

Personal Assistance Services
The group emphasized that personal assistance services (PAS) are 
absolutely essential to meet the goal of independent living.  The 
group felt that the application of the medical model to PAS may 
impair length of services, the quality of services, and care 
givers; dominance of the medical model can also disrupt services.

The supply of PAS providers varies from place to place.  The 
qualifications of attendants vary.  Their wages are insufficient 
and turnover is quick.  Incentives are needed to provide 
attendants with a career path.  Choice of attendants (either 
previously trained or willing to be trained) continues to be a 
pressing issue.  The group discussed the pros and cons of 
certification of attendants; the group believed that people with 
disabilities should be empowered to determine the services they 
need, including the training of attendants and the 
systematization and professionalization of that training.  

Currently, some people with disabilities may have to live in 
poverty in order to meet Medicaid guidelines for PAS.  A national 
policy of universal access to PAS that maintains choice and 
autonomy is needed.

The group listed two research priorities in the area of PAS:
1.  Solid data are needed on the demand for and costs of PAS, 
including the costs of not providing PAS.
2.  Research is needed to determine how reimbursement for PAS 
will change the demand for those services.  Attention should be 
paid to how voluntary help and help from family members can be 
maintained as well as care in respite services.
Health Insurance
In the area of health insurance, the group felt that the policy 
priority was universal access to a comprehensive plan that covers 
both acute and long-term services.
The group listed four research priorities in the area of health 
insurance:
1.  Determine how the comprehensive nature of benefits can be 
maintained while controlling costs.
2.  Determine how managed care will affect people with 
disabilities, particularly in the area of costly emerging 
technology.
3.  Assess what the United States can learn from other nations in 
terms of managed care.
4.  Determine whether private, long-term care insurance plans can 
be designed so that people can buy protection, and whether such a 
plan would cover people with disabilities who already need 
long-term services.

Assistive Technology
In the area of assistive technology (defined as any device or 
technique that promotes the function of people with 
disabilities), the group identified the following research 
priorities:  
1.  Determine the costs of assistive technology and universal 
barrier-free design, including the costs of not providing such 
technologies.
2.  Assess how knowledge of assistive technology and universal 
design can be better disseminated to designers and people with 
disabilities.

C.  Building a Disability Studies Discipline
Dr. Zola reported that the group rejected the idea of disability 
studies as a subdiscipline of another field.  The group also 
discussed the difficulties of building a multidisciplinary or 
interdisciplinary disability studies program.  These difficulties 
include lack of funding and organization, as well as the problem 
of faculty members whose primary loyalties (and career 
advancement potential) lie in more established disciplines.

Despite the difficulties, group members felt that there were 
opportunities for dialogue in a multidisciplinary or 
interdisciplinary context.  For such a field to emerge, the group 
felt it was necessary to include the range of physical, mental, 
and cognitive disabilities.  The dialogue among all these fields 
must be maintained.  Group members suggested a possible national 
conference on disability studies as well as continuing the 
dialogue within existing conferences.

In terms of national efforts that can develop and sustain an 
interdisciplinary field of disability studies, the group made one 
long-term recommendation:  Convene a task force of academics and 
policy makers to
map out priorities for a disability studies discipline.

Among the more immediate responses, the group included the 
following items:
1.  Create an administration on disability.
2.  Support undergraduate disability studies.
3.  Underwrite a journal on disability studies.
4.  Specifically earmark research funds for interdisciplinary 
disability studies.

Dr. Zola then summarized the group's two primary suggestions:
1.  Create disability studies predoctoral fellowships to develop 
the next cadre of specialists, with particular assistance 
designed to attract and retain people with disabilities.
2.  Create a disability policy center(s), either free-standing or 
university-based, with a wide range of educational mandates.

D.  Creating a Common Nomenclature and Classification
Dr. Brown noted that much of the group's discussion had been 
repeated in the morning conference session on the ADA.  He moved 
directly to the group's recommendations:
1.  Regardless of the nomenclature used, evaluation of progress 
toward the ADA's goals should occur at the 
interaction-with-environment ("handicap") level of analysis.  For 
example, in the case of special education, the mind-set that "the 
problem is in the students" must be abandoned and physical or 
environmental issues must be addressed.  Positive measures of how 
accommodations can be achieved need to be developed.
2.  At the personal level (disability), positive measures of 
functional capacity are needed.  This concept is important not 
just for rehabilitation purposes but also in evaluating who is 
covered under the ADA.
3.  "Handicap" as a term is extremely controversial.
4.  The ICIDH provides a classification system that other 
frameworks do not have.

Discussion
Mr. Hahn returned to the issues raised during the morning from 
the perspective of politics and political realities.  He pointed 
out that a common theme in all of the presentations was that 
discrimination affects all disadvantaged groups in society.  He 
expressed the hope that as individuals understand the 
ramifications of discrimination, they may work to create 
alliances and coalitions that will lead to the fulfillment of the 
ADA's goals through the political process.

Dr. David Gray, from the National Institutes of Health (NIH), 
offered a number of personal comments and suggestions for 
research priorities.  He reported that NIH sponsors research 
supplements for people with disabilities at all career levels.  
However, those supplements are tied to regular research grants 
and program project awards.  Dr. Gray's recommendations included 
the following points:
1.  With regard to PAS, explore different kinds of research and 
demonstration projects all over the country (perhaps funded by 
insurance companies or other private sources) to determine the 
most effective way to train attendants. 
2.  Make an above-the-line tax credit available for workers who 
must use PAS, thereby removing that deduction from the medical 
sphere.
3.  Create two sources for PAS attendants.  In the first case, 
allow the Immigration and Naturalization Service to move 
attendants to the category of "underrepresented" professions, 
thereby easing their entry into the United States.  Create a 
second source by requiring vocational education curricula to 
include training for attendants-a policy that would then flow to 
local school districts.
4.  In all research, do modeling that demonstrates how much a 
particular approach will save for specific populations.

Dr. Donald Galvin of the Washington Business Group on Health 
recommended, as a model for other federal agencies, the 
activities of the National Institute for Mental Health that 
provides funds for university-based interdisciplinary centers 
examining the economics of mental health.  A participant noted 
that the U.S. Department of Education's Office of Special 
Education Programs is currently evaluating state systems 
contracts and compiling data and policy issues related to civil 
rights and health data for students with disabilities.

One participant stated that cost-benefit analyses of PAS must be 
supplemented by qualitative evaluation of these services.  Also, 
the alternative costs of institutionalization should not be 
ignored in the data collection.

Participants then re-explored the issue of prevention of primary 
disabilities.  Whereas some participants felt very strongly that 
disability is a functional limitation having strong negative 
consequences for the individual and family, others maintained 
that individuals with disabilities are part of a minority group 
subject to discrimination and therefore at risk of being 
eliminated through primary prevention.

A plea was made for both sides to compromise on the issue of the 
ICIDH.  It was pointed out that there are many different 
qualitative and quantitative ways to measure the impact of the 
ADA.  Only through a combination of methods will researchers be 
able to converge on what progress is being made.  

A participant suggested that the relationship between individuals 
with disabilities and society, as well as other political, 
philosophical, and ethical issues being debated at the 
conference, cannot be fully explored without the perspectives of 
the humanities disciplines.  Thus, support must be found for 
research on these issues that would be conducted by scholars in 
the humanities.  The philosophical approach, it was noted, has 
been addressed (using the ICIDH) in Sweden and Finland.
Session VII

Furthering the Goals of the ADA:  Disability Policy 
Research-Where Do We Go From Here?
Moderator:  Anthony Flack, National Council on Disability
Speaker:  Irving K. Zola, Brandeis University

Dr. Zola commented that it is too soon to tell whether this 
conference will be a watershed event in the evolution of 
disability policy.  Clearly, the conference is a meeting of minds 
among policy makers and disability researchers as well as a 
forceful attempt to articulate the diverse voices of the 
disability community in the formulation of research and policy.  
Dr. Zola sought to provide some context by offering a brief 
history of the role of people with disabilities in the 
formulation of disability-related research.

Dr. Zola traced the evolution of American disability policy from 
the Civil War through the present.  In the 1980s, persons with 
disabilities entered an age of empowerment.  The hallmarks of 
this latest period are clear:  long-term demographic realities, 
including an aging population, and the challenges of new 
conditions such as AIDS, Alzheimer's disease, and learning 
disabilities; emergence of a disability research constituency; 
the appearance in print of the voices of people with 
disabilities; a shift away from pejorative descriptions of 
disability; emergence of the first national attitudinal survey of 
people with disabilities about themselves; alliances with other 
groups; increasing visibility and activism of people with 
disabilities; and development of a political constituency of 
people with disabilities.

Dr. Zola then offered a number of reflections on the conference.  
Almost all speakers emphasized that disability is anything but a 
singular, unidimensional phenomenon.  Disability is not a status 
but an ever-changing characteristic.  While some progress has 
been made in including the physical, social, economic, and 
political environments in conceptions of disability, more work 
must be done to create models and measures of disabling 
environments.  The individual experience of disability still 
receives too much emphasis.

The notion of disability pride and culture, particularly within 
the deaf community, is a new trend that confronts researchers.  
Another aspect of this notion is the fact that some types of 
assistive technology may indeed enhance performance beyond the 
capabilities of those who are not disabled.

Multicultural diversity, an issue repeatedly addressed by 
conference speakers, remains an issue for disability researchers.  
This issue is best addressed on a small scale at the local level.  
Research must be designed with an appreciation for diversity 
within racial and ethnic groups themselves, with no assumption of 
homogeneity.

Dr. Zola noted that the voices of older people and of women had 
been surprisingly silent during the conference.  He urged that 
these communities not be lulled into complacency by recent 
progress.  He also noted that statistical representation will not 
assure that the voice of an oppressed minority is heard.  People 
with disabilities must continue to actively articulate and 
advance their own concerns.
Summary and Conclusions

Sandra Swift Parrino, Chairperson, National Council on Disability
During the last three days, the community gathered at this 
conference has achieved great progress toward establishing a 
research agenda for the 1990s to further the goals of the 
Americans with Disabilities Act.  The ideas, energy, good humor, 
and hard work that have been expressed here are a tribute to all 
of you who participated in this conference.  Closing a conference 
like this is thus a difficult task, because I hate to see you all 
go.

It is important to understand, however, that this closing marks 
not an end to a conference but rather an important step in a 
process-a process to make the Americans with Disabilities Act 
work for all Americans.  What this conference has stressed is 
that research has the potential to be an important tool to 
implement the ADA.  Moreover, our participants have provided us 
with some concrete suggestions on how to use this tool, not to be 
an end unto itself, but rather to be a means toward an end.

I believe that this conference has achieved the goals outlined in 
the opening address.  These goals were to initiate a dialogue on 
furthering the goals of the ADA through disability policy 
research, to identify the resources and infrastructures available 
to enhance the process, and to articulate steps we can take to 
foster disability policy research.

Turning to the first goal, I think we all can agree that we have 
enjoyed quite a dialogue during the last 3 days.  Our speakers 
highlighted several important issues.  John Dunne turned our 
attention to the issues of barriers-legal, physical, and 
attitudinal barriers.  In his keynote address, he urged that we 
turn our attention to efforts that will have immediate value for 
persons with disabilities.  He argued that litigation monitoring, 
policy development, and education and technology issues need to 
be addressed through disability policy research.  These themes 
were repeated throughout the conference.

Both Simi Litvak and Drew Batavia provided us with an assessment 
to indicate that research is an area that, in the past, has been 
viewed with suspicion by persons with disabilities.  There 
appeared to be general agreement with Simi Litvak's point that 
our focus should not be on an evaluation of the ADA, but rather 
on its implementation.  Likewise, Drew Batavia's concern that 
research needs to emphasize process issues related to full 
inclusion was echoed by others at the conference.  All agreed 
that persons with disabilities need to be included in all stages 
of the research process.  However, the exact role of persons with 
disabilities has yet to be defined.  The participatory model 
recently developed by NIDRR is viewed as a potential major 
breakthrough in involving persons with disabilities in the 
process.

In the session on special populations, Paul Leung noted that we 
need to be more sensitive to cultural concerns.  Sylvia Walker 
raised the issue of multiple jeopardy, documented by the higher 
prevalence of disability in minority communities.

Yesterday morning, the speakers at the session on shaping an 
interdisciplinary field of disability policy research highlighted 
several issues.  Andy Schoenberg asked us to think about how the 
trickle-down of technology can be improved.  David Dean urged 
that economic studies move beyond the traditional biases of 
cost-benefit analyses.  Gerben DeJong noted that health 
professions are varied and that these different viewpoints need 
to be considered in policy research.  Irv Zola noted the tension 
between advancing a separate field of disability policy studies 
and advancing disability as a subunit of all appropriate 
disciplines.  Susanne BruyŠre argued that the vocational 
rehabilitation field needs to move towards participatory models.

In our session on classification, Michel Thuriaux argued that the 
ICIDH has proved useful as a tool for
improving the quality of life for persons with disabilities in 
other countries.  For example, he noted that it proved useful in 
developing a policy for cost reimbursement in France.  Bill Frey 
extended the use to the United States in developing an assessment 
tool for children with disabilities.   Both speakers urged that 
we keep in mind that the "handicap" classifications are not 
classifications of people, but rather of circumstances involving 
quality of life barriers.

Our session on quantitative research gave us Lois Verbrugge and 
Michele Adler, who turned our attention to the importance of this 
research to evaluation.  Lois Verbrugge reminded us that 
disability is a process.  Michele Adler urged funding for an 
important effort, the 1993-94 Disability Supplement to the 
National Health Interview Survey.  In the qualitative research 
session, Carol Holland argued that open-ended studies give us a 
depth of meaning and detail unavailable from quantitative 
research.  Most agreed that these two types of studies are both 
needed and complement each other.

This morning, Mitch LaPlante pointed out that ending 
discrimination is the primary goal of the Americans with 
Disabilities Act.  He urged that disability become a standard 
item in all federal data collection efforts.  Three steps he 
suggested were (a) funding for the Health Interview Survey 
Disability Supplement, (b) planning a continuing disability 
survey, and (c) a longitudinal study of disability.

In his summary remarks, Irv Zola noted that laws have always been 
important for persons with disabilities.  Public policy has 
slowly moved away from medical control; we are moving toward an 
age of empowerment.

Our speakers served us well by initiating a dialogue.  Some 
issues were not resolved here.  While persons with disabilities 
must be involved in the process, the extent of their 
participation is yet to be determined.  The proper mix between 
quantitative and qualitative research for fostering policy must 
be further explored.  Clearly, use of the term "handicap" in the 
ICIDH is a concern for many people.

However, by accomplishing its second and third goals, this 
conference has given us sound guidance on building infrastructure 
and establishing priorities.  Let us turn our attention first to 
infrastructure issues.

There currently are a variety of federal agencies concerned with 
disability policy research.  I will not name them all, because 
there are so many and I do not want to leave any out.  However, 
it is clear that the efforts of these agencies need to be 
coordinated.  The National Council on Disability stands ready to 
serve as a vehicle for coordinating these efforts.

However, other mechanisms are also important.  NIDRR's 
Interagency Committee on Disability Statistics has long served as 
a vehicle for bringing together data producers and users within 
the government.  It has been very involved in urging U.S. 
involvement in the ICIDH process.  Federal agencies need to 
participate in this group and take advantage of its efforts.

There are a variety of other interagency committees involved in 
aging and health issues.  Agencies interested in disability 
policy research should participate to ensure that disability 
becomes a consideration in all major federal policy decisions.

Turning last to concrete suggestions, the following recommended 
actions form the basis of a plan for fostering disability policy 
research in the 1990s.  The first are short-term steps that we 
can immediately take:
1.  Establish a set of disability indicators similar to economic 
indicators and Healthy People 2000.
2.  Continue involvement in the ICIDH.  The United States must be 
involved in this process.
3.  Fund the 1993-94 Disability Supplement.  This will establish 
any baseline data needed.

There are also several long-term actions we should begin to 
implement:
1.  Involve persons with disabilities in the research process.  
This means that special populations must also be involved.
2.  Develop positive measures of functional capacity and 
accommodation.  We must move from a medical to a disability 
model.
3.  Develop mechanisms for disseminating research in forums that 
policy makers will use.  Examples of such mechanisms are the 
Harris Poll and Office of Technology Assessment studies.
4.  Develop mechanisms for integrating qualitative and 
quantitative study results.
5.  Encourage research in the area of personal assistance 
services.  Such research should focus on empowerment, attendant 
training, and service delivery.
6.  Encourage research in the area of health insurance.  Such 
research must focus on service delivery to persons with 
disabilities.
7.  Focus on developing a field of disability policy.

The National Council is very grateful indeed for your 
participation during this conference.  Special thanks have been 
given during the 3 days we have been here, but once again I would 
like to thank Irv Zola-he has very little free time and did give 
us some extra time; Mitch LaPlante, for planting the idea; Gerben 
DeJong; Gerry Hendershot; Ray Seltser; Kate Seelman (who was on 
the staff of the Council); my assistant, Janis O'Meara, (who all 
of a sudden got all of it loaded onto her shoulders, and has done 
a wonderful job); and Jacquie Sheehey from Walcoff & Associates, 
Inc. (they have done a magnificent job and her whole staff should 
be commended).  We certainly want to thank the sign language 
interpreters.  I thank all the members of the National Council 
and Scott Brown, who has worked at two jobs constantly, both at 
OSERS and with the Council.  If I have left anyone out, I do 
apologize.

From the heart, the best way for me to wind up my remarks is to 
note that the Council looks at these problems from a very 
pragmatic viewpoint.  We look at the problems facing a person 
with a disability.  I am motivated on a regular basis by my own 
son, who is severely physically disabled.  I mention him because 
he has taught me the problems that face many people with 
disabilities.  These problems are what continue to motivate so 
many of us.  He is completely independent because he has a 
personal assistant.  When he does not have that personal 
assistant, he is totally dependent.  He is a very good example of 
somebody who went through the educational system and saw the 
segregation in that system.  He is a person who needs health 
insurance, personal assistance, and assistive technology.  These 
are issues that we hope you all will help us with because they 
are very critical issues that the ADA does not address.  So many 
people who need personal assistance, for example, or who need 
insurance, may never even face discrimination because they cannot 
even get out of their homes.  So the ADA may never really affect 
them at all.  

We hope that you will assist us with your expertise and your 
commitment and your skills in what we hope is expressed in the 
title of this conference, Furthering the Goals of the ADA Through 
Disability Policy Research.  We need your data and your research 
to back up the policy decisions that have to be made and 
presented to the policy makers.  So we are depending on you.  We 
are here to assist you in any way that we can.  We thank you 
very, very much for coming.  We are very grateful for your 
leadership, which has been so outstanding for so many years.  
Thank you for coming and Godspeed.
Section II:  Conclusions and Recommendations

Background
The conference produced literally hundreds of suggestions for 
research on specific topics.  Some of these suggestions were 
included in the recommendations of the eight breakout sessions.  
Many more appeared in the papers written by conference 
presenters.

As might be expected, numerous suggestions for disability 
research extended beyond the civil rights scope of the ADA.  
Indeed, some participants discussed whether the four major goals 
of the ADA (equality of opportunity, full participation, 
independent living, and economic self-sufficiency) can or should 
be measured at this stage.  Several participants stressed the 
need to differentiate between measuring the current ADA 
compliance and the future ADA outcomes.

In addition to suggestions for specific studies, conference 
participants developed a number of recommendations concerning the 
research process itself.  They addressed issues ranging from the 
cultural and philosophical perspectives of disability policy 
researchers to the political and social climate in which research 
results are received.  Some participants believed that the 
advocacy roles of some disability researchers may unduly 
influence their research design and results.  At the same time, 
calls were made for closer collaboration with advocacy groups of 
all types to bring disability research results and disability 
issues to greater public prominence.  Underlying the discussion 
of advocacy was a perception that disability policy researchers 
have not been entirely successful in satisfying the needs of 
interested policy makers.

In terms of research methodologies, conference participants 
generally agreed that a broad array of techniques would give the 
best picture of disability.  Qualitative and quantitative 
methodologies were recommended.  

Conference participants emphatically disagreed with one another 
about the usefulness of the ICIDH as a framework for conducting 
research and analyzing results.  

Indeed, conference participants seemed about evenly divided among 
those who believe individuals with disabilities experience 
functional limitation and those who consider individuals with 
disabilities members of an oppressed minority group.  These 
philosophical differences about the nature of disability 
naturally influenced the differing responses to issues raised 
during the conference.

One area of apparent agreement among conference participants was 
the importance of seeing the individual with a disability as a 
part of society as a whole rather than as an isolated element.  
At the same time, participants stressed the empowering nature of 
concepts such as individual choice and autonomy for people with 
disabilities.

Recommendations listed without attribution are the work of more 
than one person, developed in either the breakout sessions or the 
conference plenary sessions.

This section is broken down by topic into the eight plenary 
sessions of the conference and the eight breakout sessions for 
easy reference.

A.  Conference Plenary Sessions

Session I-Disability Research and Enforcement of the ADA
Mr. John R. Dunne
Mr. John R. Dunne, Assistant Attorney General, Civil Rights 
Division, U.S. Department of Justice, noted several critical 
areas that have been neglected by researchers:  (a) litigation 
monitoring, (b) policy development, (c) education, and (d) 
technology.  Related issues on which research should be focused 
include discrimination in standardized testing procedures and 
environmental illness and its possible links to disabilities. 

Training and monitoring concerns also exist, according to Mr. 
Dunne, who suggested the following research and training 
priorities:
1.  Improve the training of architects and attorneys to raise the 
ADA "literacy level" in these two professions. 
2.  Document the activities of those calling themselves experts 
on the ADA who play on the fears of small business owners. 
3.  Monitor state and local compliance with Title II. 

Session II (Part 1)-Putting Research to Work for the Realization 
of the Goals of the ADA:  The Perspective of the Community of 
Persons With Disabilities

Dr. Simi Litvak
In her paper, Dr. Simi Litvak offered a number of recommendations 
concerning disability policy research:
1.  The goals of a particular study must meet the needs of the 
particular stage of the policy process life cycle for it to be 
useful to policy makers.
2.  During the policy formulation stage, policy makers look for 
research on the problem, past solutions, and evaluation of policy 
options and trade-offs.
3.  During the policy execution phase, policy makers look for 
research on the implementation process, sites, costs of 
implementation, how the stakeholders feel, and problems with 
implementation (the current stage in the policy life cycle of the 
ADA).
4.  During the final stage in the policy process, policy makers 
are interested in research on accountability and quality.

Dr. Litvak also listed important implementation issues and 
questions for assessing the progress of the ADA:
1.  Track compliance.
2.  Evaluate the nature and quality of technical assistance being 
provided to better business bureaus, hotel associations, 
university administrators, and others.
3.  Document and disseminate models that demonstrate good 
solutions.
4.  Conduct marketing research on what best "sells" the ADA, 
disability rights, and integration.
5.  Research additional solutions to technological and mechanical 
issues.
6.  Conduct access guidelines research covering a wider range of 
persons with disabilities.
7.  Define universal design parameters.
8.  Assess the barriers inherent in and accommodations made to 
standardized testing procedures for people with disabilities.
9.  Research methods (tax credits, grants, vocational 
rehabilitation funding, etc.) of spreading the costs of necessary 
accommodations among the different players.
10.  Further assess the needs of people with disabilities (e.g., 
people with psychiatric disabilities in the workplace, in medical 
settings, and in educational facilities) whose accommodation 
needs were not considered in any depth by the writers of the ADA.


Mr. Andrew Batavia
In his paper, Mr. Andrew Batavia listed a number of relevant 
disability policy research questions that should be asked:
1.  Is the ADA being implemented successfully?  What have been 
its effects?  What are the model practices used by covered 
entities?  How has technical assistance been useful and how can 
it be improved?
2.  Which populations are served by disability programs?  Is the 
ADA serving racial and other minorities with disabilities 
adequately?  How can their needs be better addressed?
3.  How should researchers define populations at high risk of 
disability or secondary disability (e.g., medical complications)?  
What programs and interventions can be developed and implemented 
to reduce the risk of disability or secondary disability?
4.  What is the unmet need for personal assistance services?  How 
many people are currently receiving unpaid personal assistance 
services from relatives and friends who would demand paid 
services if a national program were established?
5.  What are the unmet needs for assistive devices?  How much 
money would the satisfaction of such needs cost?  How much would 
assistive technology decrease institutionalization, enhance 
employability, and increase ability to live independently?
6.  What are the unmet health care needs and costs of people with 
disabilities by impairment, functional status, and demographic 
variables?  How can society efficiently meet their needs while 
reducing costs?  How would the various health care reform 
proposals likely affect people with disabilities?
7.  What are the unmet needs of people with disabilities with 
respect to education and training, employment, housing, 
telecommunications, and transportation?  How can society 
efficiently meet their needs while reducing costs?
8.  How can researchers best measure "handicapping" environmental 
variables (e.g., transportation and architectural barriers), 
incorporate such variables into functional status measurement 
instruments, and apply them appropriately in policy contexts?
9.  How can researchers best define and operationalize concepts 
such as "quality of life" and "independence" for people with 
disabilities?  How can these concepts be applied in policies and 
programs for people with disabilities?
10.  What are the best ways to finance and deliver assistive 
devices, personal assistance services, and adequate health 
insurance for people with disabilities?
11.  How do the various disability laws and policies interact 
with each other?  Do they at times conflict and create 
inadvertent disincentives to work or to live independently?

According to Mr. Batavia, an effective public policy on 
disability policy research would recognize the appropriate roles 
of advocates, researchers, and policy makers and the importance 
of meaningful and appropriate participation by people with 
disabilities in the research and policy-making process.  
Advocates, researchers, and policy makers should ask 
representatives of the community of people with disabilities, 
including underrepresented people with disabilities, the 
following questions in allocating scarce research funds:
1.  What are the specific research needs of persons with 
disabilities?
2.  Which specific subpopulations of people with disabilities 
will benefit from this research?
3.  How will it ultimately affect their lives?
During Session II, several suggestions for improving the quality 
of disability policy research were made:
1.  Advocate after conducting research, not before.
2.  Train more researchers with disabilities.
3.  Take steps to bring disability policy research into 
mainstream scientific literature, which will necessarily dictate 
the improvement of disability policy research.
4.  Establish objectivity by truthfully describing research 
methods and assumptions and by separating findings from 
recommendations.

Session II (Part 2)-Putting Research to Work for the Realization 
of the Goals of the ADA:  The
Perspective of Minorities and Other Underserved Populations

Dr. Paul Leung
Working from the perspective that the ADA does not account for 
racial, ethnic, or cultural differences and that lack of 
sufficient data excludes such groups from the policy process, Dr. 
Paul Leung offered several research questions related to the 
ADA's impact on racial or ethnic minorities:
1.  Are outreach efforts, as presently practiced, effective?  If 
not, what are some ways in which outreach efforts can be 
improved?
2.  If persons understand the legislative intent of the ADA, are 
they using it?  If not, why?
3.  Are there more effective models that may allow persons who 
have not participated to do so?

Dr. Sylvia Walker
Dr. Sylvia Walker assessed current research efforts to document 
disability in racial or ethnic minority communities:
1.  Relatively little research has been conducted that examines 
specific variables relative to ethnicity, disability, health 
status, income, education, geographic location, and other 
relevant factors.
2.  Research that provides information about Asian Americans, 
Native Americans, Pacific Islanders, and other underrepresented 
groups with disabilities is needed.
3.  AIDS and other disabilities are more prevalent in minority 
communities than in other cultural groups in the United States.  
Therefore, the incidence of health care problems, illness, and 
other sociological challenges make the need for increased 
rehabilitation policy research critical.

Dr. Evelyn Davis
Dr. Evelyn Davis offered the following recommendations:
1.  The disability community must insist on further research into 
the developmental disabilities of children born with alcohol and 
drug exposure and HIV and the impact of those disabilities on 
parents, educators, and service providers.  Researchers must be 
trained to cope with the special needs of these populations.
2.  Researchers must be trained to elicit data with the use of 
culturally appropriate techniques.

Session III-Shaping an Interdisciplinary Field of Disability 
Studies Responsive to the Goals of the ADA

Dr. David Dean
Dr. David Dean outlined a disability research agenda for 
employment policies in light of the ADA:
1.  Determine the costs of reasonable accommodation and assistive 
technology to businesses, using terms as explicit as possible.
2.  Case studies at the company level can help determine the 
hidden costs of compliance with the ADA.
3.  Controlled experimentation to determine discriminatory hiring 
practices can be used to encourage businesses to comply with the 
ADA.
4.  In general, businesses may be more willing to comply with the 
ADA when owners are convinced that it is in their rational 
interest to do so.  Methods such as measuring reduced costs 
traceable to compliance with the ADA in areas such as lower 
workers' compensation expenditures and reduced long-term 
disability benefits may convince owners to comply.
5.  Businesses must be made aware of the costs of noncompliance 
with the ADA.
6.  Researchers should look at the costs versus benefits of 
return to work programs, estimates of which have been wildly 
inflated by businesses.

Dr. Gerben DeJong
Dr. Gerben DeJong listed a number of concrete steps that can be 
taken to develop a disability and health policy research 
capacity:
1.  Educate members of health-related professions.
2.  Locate an appropriate academic home for the field.  Candidate 
homes include graduate programs in public policy and schools of 
public health.  Noncandidates include clinical disciplines and 
rehabilitation counseling centers.
3.  Develop a curriculum.
4.  Develop graduate and postdoctoral research opportunities 
(course papers, graduate research assistantships, master's and 
doctoral research, and research internships).
5.  Recruit faculty members with disabilities.
6.  Recruit students with disabilities.
7.  Create postgraduate training for people knowledgeable about 
disability issues who need research and statistics training and 
for people from other disciplines who need to be educated on the 
values and concepts of disability rights.
8.  Create disability and health policy research centers.
9.  Support journals and professional organizations as outlets 
for publications.

In his paper, Dr. DeJong also listed the resources needed for 
such an undertaking.  

Dr. Susanne BruyŠre
Dr. Susanne BruyŠre listed three implications of the ADA for 
research in vocational rehabilitation:
1.  Enhanced participation in research by persons with 
disabilities.
2.  Collaborative research with businesses and labor unions.
3.  Research on impact with other interfacing legislation.

According to Dr. BruyŠre, interdisciplinary interfaces are needed 
with the economics, engineering, health, and social policy 
fields.

Dr. Mary Chamie
Dr. Mary Chamie recommended two rules for interdisciplinary 
research and made a suggestion about controlled experimentation:
1.  Build in full exchange across the disciplines.
2.  Include measures that ensure that the research is fully 
interdisciplinary, such as internships that allow individuals 
from one discipline to share the activities of another.
3.  With regard to controlled experimentation in the disability 
field, researchers should also consider controlling the 
environment (width of doors, height of steps, etc.) in any 
experiment, not just the participants.

Session IV-Strategies for Adopting Common Nomenclature That is 
Responsive to the Goals of the ADA:  National and International 
Experiences


Dr. Michel Thuriaux
Dr. Michel Thuriaux offered a single broad recommendation in the 
area of nomenclature:
The careful use of collectively agreed-upon nomenclature will 
help the international community address the increasing issues of 
disability.

Dr. William Frey
On the national level, Dr. William Frey also endorsed the 
acceptance of a common nomenclature:
1.  Agreement on terminology and on a model of "disablement" will 
lead to better data collection, which will in turn affect the 
adoption of policies concerning people with disabilities.
2.  ICIDH provides a unifying terminology and a model for 
disability researchers that meshes with the goals of the ADA.

Dr. Donald Patrick
Dr. Donald Patrick recommended studies such as those funded by 
the National Institute for Mental Health in the area of mental 
health as models for local, area-based studies.

Session V (Part 1)-Research Strategies for Statistics:  Survey 
Data and Quantitative Research

Dr. Lois Verbrugge
Dr. Lois Verbrugge's five recommendations for researchers (all of 
which are discussed in greater detail, including subcategories of 
recommendations, in her paper) included the following items:
1.  Efforts to increase similarity in disability concepts and 
definitions should continue, but not at the expense of furthering 
science itself.  In the absence of consensus, clarity is the top 
priority.
2.  By illuminating the disablement process for various chronic 
conditions and across ages from young to old, researchers will 
obtain powerful implications for clinical care and health 
insurance programs about points and strategies for interventions 
that work.
3.  Population surveys and the empirical research that they 
generate will not directly reveal the ADA's success, but their 
information is invaluable for tracking the nature of disability 
in the population.
4.  The disability experience must be measured in its own terms 
and at its own pace.  Some methodological research is needed to 
help survey designers choose apt language and apt time windows.
5.  In the current scientific climate (which is likely to 
continue), the federal government must take principal 
responsibility for generating large-scale disability surveys and 
for providing funds for analysis.

Ms. Michele Adler
Ms. Michele Adler proposed strengthening existing statistical 
surveys to include more information about disability:
1.  Ensure that disability data are collected in the Year 2000 
Decennial Census by participating in the process now.
2.  Ensure that disability data are collected routinely when the 
annual Survey of Income and Program Participation is redesigned 
starting in 1995.
3.  Ensure that disability data are expanded and collected 
routinely when the annual Current Population Survey (CPS) is 
redesigned starting in 1995.
4.  Ensure that the 1994-1995 National Health Interview 
Disability Survey can begin as scheduled.
5.  Ensure that disability is a major issue of the annual 
National Health Interview Survey (NHIS) when it is redesigned 
starting in 1995.

Session V (Part 2)-Research Strategies for Statistics:  Survey 
Data and Qualitative Research

Dr. Nora Groce
Dr. Nora Groce stated that all disability researchers should ask 
themselves two questions:
1.  What do we need to know about the individual and the 
individual in the community to design workable programs?
2.  How do we communicate those findings to policy makers, 
advocates, and professional groups (physicians, etc.)?

Session VI-Research Strategies for Monitoring the ADA

Dr. Mitchell LaPlante
Dr. Mitchell LaPlante offered three long-term recommendations for 
future data collection efforts:
1.  All federal statistical agencies should incorporate 
disability measurement into data collection efforts.
2.  Statistical reports should tabulate information by disability 
status, where feasible.
3.  The feasibility of a national disability survey should be 
considered.

In the immediate future, Dr. LaPlante also recommended that-
1.  The 1993-1994 National Health Interview Disability Survey 
should be funded.
2.  Congressional appropriations should be sought to fund ongoing 
collection of disability statistics.

Dr. Jane West
Dr. Jane West offered three recommendations for monitoring the 
ADA:
1.  The federal government should provide the impetus for 
relevant disability policy research.
2.  This impetus should not be associated with just one 
discipline (health, education, rehabilitation, etc.).
3.  This impetus should be broad enough to cover all the various 
areas that have an impact on disability.

Session VII-Furthering the Goals of the ADA:  Disability 
Policy-Where Do We Go From Here?

Dr. Irving Zola
Dr. Irving Zola offered a number of reflections on disability 
research:
1.  Disability is best conceptualized not as a status but rather 
as a characteristic, and a changing one at that.
2.  There must be a recognition of the continuous rather than the 
dichotomous nature of disability.
3.  Researchers must create measures and models of disabling 
environments rather than focus on the individual person as the 
basic unit of analysis.
4.  The positive aspects of disability (e.g., deaf culture, 
assistive devices that enhance prior lost function) should be 
captured by disability researchers.
5.  The dynamics of culture can best be captured in small-scale, 
local studies designed with an appreciation for diversity within 
racial and ethnic groups themselves and with no assumption of 
homogeneity.
6.  Persons experiencing the entire range of disabilities from 
all racial, ethnic, gender, age, socioeconomic, and other 
groupings should be actively involved in the disability research 
and policy-making process.

Summary and Conclusions

Mrs. Sandra Swift Parrino
Looking back over the discussions during the conference, Mrs. 
Sandra Swift Parrino suggested three short-term steps to foster 
disability policy research in the 1990s:  
1.  Establish a set of disability indicators.
2.  Continue involvement in the ICIDH.
3.  Fund the 1993-1994 NHIS Disability Supplement.

Mrs. Parrino also listed a series of activities for the long 
term:  
1.  Involve persons with disabilities in the research process.
2.  Develop positive measures of functional capacity and 
accommodation.
3.  Develop mechanisms for disseminating research in forums that 
policy makers will use.
4.  Develop mechanisms for integrating qualitative and 
quantitative study results.
5.  Encourage research in the area of personal assistance 
services.
6.  Encourage research in the area of health insurance.
7.  Focus on developing a field of disability policy.

B.  Breakout Sessions

Equality of Opportunity
Members of the breakout session identified six general issues 
that extend across the specific areas of
employment, education, public accommodations, government 
services, and telecommunications to affect equality of 
opportunity:
1.  Access to health care.
2.  Access to personal assistance services.
3.  Monitoring compliance with the ADA.
4.  Defining and achieving equality of opportunity.
5.  Increasing public awareness of the ADA and the right to 
equality of opportunity under the ADA.
6.  The need for basic data on equality of opportunity in 
employment, education, etc.

Research priorities affecting equality of opportunity were 
identified by category:
Employment
1.  How have employers responded to the ADA?  Have they 
determined their responsibilities under the ADA?  How?  How have 
they responded to those new responsibilities?
2.  What are the work disincentives associated with SSI, SSDI, 
and the lack of adequate health insurance for people with 
disabilities?

Education
1.  What are the best models of special education and integration 
of students with disabilities into mainstream classes?
2.  What programs and models work best for transition from school 
to work?

Public accommodation
1.  Identification of unmet needs.
2.  Determination of the effectiveness of accommodations such as 
architectural modifications.

Government services
1.  How do differing definitions of disability in federal 
programs interact with one another to affect equality of 
opportunity for government services?
2.  How can interpretations of the ADA be coordinated across 
states?

Telecommunications
1.  How do public carriers train personnel to meet standards of 
effective service?
2.  How should systems designers be trained in considering 
accessibility factors?

Full Participation
During this breakout session, it was determined that any research 
conducted on full participation must include these research 
priorities:  
1.  Determine the quality and degree of participation.
2.  Institute freedom of choice in considering whether to 
participate or not.
3.  Are separate but equal arrangements truly equal and do they 
truly allow full participation?
4.  Barriers to participation are multiple-the ADA is only a 
guideline, not a guarantee to full participation.
5.  Barriers to full participation arise if an individual does 
not know what opportunities are available to him or her.
6.  The dissemination of information about the ADA is incomplete, 
meaning that barriers to full participation remain for 
individuals who are not familiar with the ADA.
7.  Who makes up the reference group by which full participation 
is judged?  How can participation be evaluated across the 
spectrum of disability?
8.  The current national debate over health care obviously 
affects people with disabilities.  Immediate research is needed 
on the effects of the different proposals on people with 
disabilities, particularly the proposals for prevention of 
disabilities.
9.  People with disabilities are not isolated from society but 
are a part of the whole, meaning that full participation should 
be considered from both individual and societal perspectives.
10.  All of the goals of the ADA are extremely complex and 
require input from people with disabilities, philosophers, and 
people who study ethical issues using quantitative, qualitative, 
and participatory research methodologies.

Independent Living
Members of the breakout session noted that the community of 
persons with disabilities and disability researchers are moving 
from a medical paradigm to a disability paradigm.  This movement 
presents an obvious question:  How is research based on this new 
paradigm translated into policy?  Both quantitative and 
qualitative research methodologies can contribute to this debate.

Research priorities with respect to independent living include 
the following items:  
1.  Operationalize what "independent living" means and test its 
implications.
2.  Study the implementation of the ADA now and its outcomes 
later.

Economic Self-Sufficiency
Economic self-sufficiency was defined in this breakout session as 
follows:
An individual is economically self-sufficient if that individual 
earns or can earn enough to meet his or her basic life needs.  A 
household is economically self-sufficient if someone in that 
household (or the household collectively) earns enough to meet 
the household's basic needs.

Research priorities in the general area of economic 
self-sufficiency include the following items:
1.  Establish the need for baseline national statistics on 
economic self-sufficiency for people with disabilities.
2.  Identify federal agencies that will support such a survey.
3.  For people with disabilities who meet the various federal 
eligibility criteria (such as those for Social Security and 
SSDI), what are the factors that separate those who work from 
those who do not work?
4.  Examine upward mobility within jobs for persons with 
disabilities.
5.  Examine the quality of training provided to persons with 
disabilities.  Determine what succeeds in promoting economic 
self-sufficiency.
6.  Compare lifetime earnings and upward mobility for people with 
various disabilities with those of the general population.
7.  Establish the need for a variety of integrated programs.
8.  Establish the need for more stringent evaluations of programs 
intended to promote economic self-sufficiency among people with 
disabilities.  Define success for such programs.
9.  Determine what answers are needed by policy makers.
10.  Extend research to examine economic self-sufficiency issues 
beyond the working age of persons with disabilities.
11.  Document those programs and policies that are now 
successful.
12.  Explore ways to better utilize existing data.

A member of the audience suggested a thirteenth priority:
13.  Document the importance of reasonable accommodation in the 
workplace in enhancing the economic self-sufficiency of workers.

Issues Related to Special Populations

At-Risk Populations
Members of the breakout session identified seven at-risk 
populations:  low-income families, young black
males (13-18 years old) with disabilities (e.g., learning 
disabled, mentally ill), individuals with psychiatric 
disabilities, individuals whose primary language is not English, 
individuals with HIV/AIDS, Native Americans and Alaska Natives 
(excluded from the ADA because of tribal sovereignty), and recent 
immigrants who do not speak English.

Strategies for researchers interested in at-risk populations 
include the following items:
1.  Do not assume that nothing has been done by the target group.  
At-risk populations are often perceived to have nothing to offer.
2.  Ensure that the dissemination of research results or outcomes 
can be translated into action steps that can benefit the target 
community.
3.  Make sure that the research is done in a culturally sensitive 
manner.
4.  Analyses are often erroneous.  The target group should be 
involved in the design, implementation, analysis, and 
dissemination of the research.

Discrimination
Research strategies in the area of discrimination identified by 
the session participants include the following items:
1.  Establish alternative forums for the dissemination of 
research done by minority researchers.
2.  Establish that all funding should meet strict criteria that 
demonstrate the inclusion of women and special populations and, 
in particular, the community upon which the research is focused.
3.  Funding sources should follow up to ensure that criteria are 
being met.
4.  All research must be designed to respect cultural values and 
strive for more inclusiveness in the research process and its 
outcomes.

Emerging Issues

PAS
PAS are absolutely essential to meeting the ADA's goal of 
independent living.  The members of this session identified the 
following research priorities in the area of PAS:
1.  Solid data are needed on the demand for and costs of PAS, 
including the costs of not providing PAS.
2.  Research is needed to determine how reimbursement for PAS 
will change the demand for those services.  Attention should be 
paid to how voluntary help and help from family members can be 
maintained as well as care in respite programs.
3.  Explore different kinds of research and demonstration 
projects all over the country (perhaps funded by insurance 
companies or other private sources) to determine the most 
effective way to train attendants.
4.  Make an above-the-line tax credit available for workers who 
must use PAS, thus removing that deduction from the medical 
sphere.
5.  Create two sources for PAS attendants.  In the first case, 
allow the Immigration and Naturalization Service to move 
attendants to the category of underrepresented professions, thus 
easing their entry into the United States.  Create a second 
source by requiring vocational education curricula to include 
training for attendants, a policy that would then flow to local 
school districts. 
6.  In all research, utilize modeling that demonstrates how much 
a particular approach will save and for which populations.

Health Insurance
In the area of health insurance, an overarching policy priority 
determined by the group was universal access to a comprehensive 
plan that covers both acute and long-term services.

Research priorities in the area of health insurance were 
determined by the group as follows:
1.  Determine how the comprehensive nature of benefits can be 
maintained while controlling costs.
2.  Determine how managed care will affect people with 
disabilities, particularly in the area of costly emerging 
technology.
3.  Assess what the United States can learn from other nations in 
terms of managed care.
4.  Determine whether private, long-term care insurance plans can 
be designed so that people can buy protection and whether such a 
plan would cover people with disabilities who already need 
long-term care services.

Assistive Technology
In the area of assistive technology (defined as any device or 
technique that promotes the function of people with 
disabilities), the following research priorities were identified 
by the group:  
1.  Determine the costs of assistive technology and universal 
barrier-free design, including the costs of not providing such 
technologies.
2.  Assess how knowledge of assistive technology and universal 
design can be better disseminated to designers and people with 
disabilities.

Building a Disability Studies Discipline
Despite obvious difficulties, opportunities for dialogue exist in 
a multidisciplinary or interdisciplinary context that includes 
the range of physical, mental, and cognitive disabilities.  
Dialogue among all these fields must be maintained.  As a result, 
a possible national conference on disability studies was 
suggested by breakout session members, as was combining the 
dialogue within existing conferences.

In terms of national efforts that can develop and sustain an 
interdisciplinary field of disability studies, one long-term 
recommendation was made:  

Convene a task force of academicians and policy makers to outline 
priorities for a disability studies discipline.  

More immediate responses include the following items:
1.  Create an administration on disability.
2.  Support undergraduate disability studies.
3.  Underwrite a journal on disability studies.
4.  Specifically earmark research funds for interdisciplinary 
disability studies.

Overarching suggestions of particular importance include the 
following two items:
1.  Create predoctoral fellowships in disability studies to 
develop the next cadre of specialists, with particular assistance 
designed to attract and retain people with disabilities.
2.  Create a disability policy center(s), either free-standing or 
university-based, with a wide range of educational mandates.

Dr. Donald Galvin recommended the activities of the National 
Institute for Mental Health in funding university-based 
interdisciplinary centers, which look at the economics of mental 
health, as a model for other federal agencies.

Creating a Common Nomenclature and Classification
This breakout session offered four suggestions regarding 
nomenclature:  
1.  Regardless of the nomenclature used, evaluation of progress 
toward the ADA's goals should occur at the 
interaction-with-environment ("handicap") level of analysis.  For 
example, in the case of special education, the mind-set that "the 
problem is in the students" must be discarded and we must look 
toward physical or environmental issues.  Positive measures of 
how accommodations can be achieved must be sought.
2.  At the personal level ("disability"), positive measures of 
functional capacity are needed.  This concept is important not 
just for rehabilitation purposes but also in evaluating who is 
covered under the ADA.
3.  "Handicap" as a term is extremely controversial.
4.  The ICIDH provides a classification system that other 
frameworks do not have.

Section III:  Appendices

Appendix A:  Conference Agenda

"Furthering the Goals of the ADA Through Disability Policy 
Research in the 1990s"
Hyatt Regency Washington on Capitol Hill
Washington, DC

Agenda
Monday, December 7, 1992

8:00-9:00  Registration/Continental Breakfast

9:00-9:30  Welcome and Introduction
Speakers:
  Sandra Swift Parrino, Chairperson, National Council on 
Disability
  William E. McLaughlin, Acting Director, National Institute on 
Disability and Rehabilitation Research

9:30-10:00  Session I
Keynote Address-"Disability Research and Enforcement of the 
Americans with Disabilities Act"
Speaker:  John R. Dunne, Assistant Attorney General, Department 
of Justice, Civil Rights Division

10:00-10:15  Break

10:15-11:45  Session II (Part 1)
Putting Research to Work for the Realization of the Goals of the 
ADA:  The Perspective of the Community of Persons With 
Disabilities
Moderator:  A. Kent Waldrep, National Council on Disability
Speakers:  
  Simi Litvak, World Institute on Disability
  Andrew Batavia, Abt Associates
Discussant:  Harlan Hahn, University of Southern California

11:45-1:15  Lunch (On Your Own)

1:15-2:30  Breakout Sessions
  Equality of Opportunity-Andrew Batavia, Facilitator
  Full Participation-Simi Litvak, Facilitator
  Independent Living-David Pfeiffer, Facilitator
  Economic Self-Sufficiency-Paul Leung, Facilitator

2:30-3:45  Session II (Part 2)
  Putting Research to Work for the Realization of the Goals of 
the ADA:  The Perspective of Minorities and Other Underserved 
Populations
Moderator:  Frederick Bedell, National Council on Disability
Speakers:
  Paul Leung, University of Illinois at Urbana-Champaign
  Sylvia Walker, Howard University

Discussant:  Evelyn Davis, Harlem Hospital

3:45-4:00  Break

4:00-5:00  Reports from Breakout Sessions
Moderator:  John A. Gannon, National Council on Disability
Sessions:
  Equality of Opportunity-Andrew Batavia, Facilitator
  Full Participation-Simi Litvak, Facilitator
  Independent Living-David Pfeiffer, Facilitator
  Economic Self Sufficiency-Paul Leung, Facilitator

Tuesday, December 8, 1992

8:00-8:30  Registration/Continental Breakfast

8:30-9:45  Session III
Shaping an Interdisciplinary Field of Disability Studies 
Responsive to the Goals of the ADA
Moderator:  David Gray, National Center for Medical 
Rehabilitation Research
Speakers:
  Economics-David Dean, University of Richmond
  Engineering-Andrew Schoenberg, University of Utah
  Health-Gerben DeJong, National Rehabilitation Hospital
  Social Policy-Irving K. Zola, Brandeis University
  Vocational Rehabilitation-Susanne M. BruyŠre, Cornell 
University

9:45-10:00  Break

10:00-11:30Session IV
Strategies for Adopting Common Nomenclature That Is Responsive to 
the Goals of the ADA:  National and International Experiences
Moderator:  Gerry Hendershot, National Center for Health 
Statistics
Speakers: 
  Michel Thuriaux, World Health Organization
  William Frey, Disability Research Systems, Inc.
Discussants:
  Adele Furrie, Post Censal Surveys Statistics, Canada
  Donald Patrick, University of Washington

11:30-1:00  Lunch (On Your Own)

1:00-2:15  Breakout Sessions
  Issues Related to Special Populations-Sylvia Walker, 
Facilitator
  Emerging Issues-Mitchell LaPlante, Facilitator
  Building a Disability Study Discipline-Irving Zola, Facilitator
  Creating a Common Nomenclature & Classification-Scott Campbell 
Brown, Facilitator

2:15-3:45  Session V (Part 1)
Research Strategies for Statistics:  Survey Data and Quantitative 
Research
Moderator:  Scott Campbell Brown, Department of Education
Speakers:
  Lois M. Verbrugge, University of Michigan
  Michelle Adler, Department of Health and Human Services
Discussants:
  Mary Chamie, United Nations
  Michael Adams, Centers for Disease Control

3:45-4:00  Break

4:00-5:00  Session V (Part 2)
Research Strategies for Statistics:  Survey Data and Qualitative 
Research
Moderator:  Mary Raether, National Council on Disability
Speaker:  Carol Howland, Baylor College of Medicine
Discussants:
  Barbara Altman, Agency for Health Care Policy Research
  Nora Groce, Yale University

Wednesday, December 9, 1992

8:00-8:30  Registration/Continental Breakfast

8:30-10:00  Session VI
Research Strategies for Monitoring the ADA
Moderator:  Raymond Seltser, Agency for Health Care Policy and 
Research
Speaker:  Mitchell LaPlante, University of California at San 
Francisco
Discussants:
  David Pfeiffer, Suffolk University
  Carolyn L. Feis, General Accounting Office
  Jane West, Jane West & Associates

10:00-10:15  Break

10:15-11:30  Reports from Breakout Sessions
Moderator:  Harlan Hahn, University of Southern California
Sessions:
  Issues Related to Special Populations-Sylvia Walker, 
Facilitator
  Emerging Issues-Mitchell LaPlante, Facilitator
  Building a Disability Study Discipline-Irving Zola, Facilitator
  Creating a Common Nomenclature & Classification-Scott Campbell 
Brown, Facilitator

11:30-1:00  Lunch (On Your Own)

1:00-2:30  Session VII
Furthering the Goals of the ADA:  Disability Policy 
Research-Where Do We Go From Here?
Moderator:  Sandra Swift Parrino, Chairperson, National Council 
on Disability
Speaker:  Irving Kenneth Zola, Brandeis University 

2:30-3:00  Summary and Conclusions
Speaker:  Sandra Swift Parrino, Chairperson, National Council on 
Disability

Appendix B:  Participant List

Michael Adams 
Centers for Disease Control
Division of Birth Defects and Developmental Disabilities
National Center for Environmental Health and Injury
1600 Clifton Road
Atlanta, GA 30333
Phone: (404) 488-4706

Michelle Adler
U.S. Department of Health and Human Services
Office of the Assistant Secretary for Planning and Evaluation
200 Independence Avenue, SW, Room 424E
Washington, DC 20201
Phone: (202) 690-6172

Elizabeth Ahuja 
Department of Veterans Affairs (008B22)
810 Vermont Avenue, NW
Washington, DC 20420
Phone: (202) 535-8407

Mary Ann Allard 
Shriver Center
200 Trepelo Road
Waltham, MA 02254
Phone: (617) 642-0293

Cheryl Allee 
4921 Seminary Road, Apt. 1201
Alexandria, VA 22311
Phone: (703) 379-1283

Barbara Altman 
Agency for Health Care Policy and Research
NMES, Intermural Division
5600 Fishers Lane, Room 18A 31
Rockville, MD 20857
Phone: (301) 227-8400

Thomas P. Anderson 
1201 Yale Place, Apt. 1003
Minneapolis, MN 55403
Phone: (612) 332-3527

Lynnette Araki 
PELS/OPEP/NCHS
6525 Belcrest Road
Room 1100, Presidential Building
Hyattsville, MD 20782
Phone: (301) 436-7142

Jeanne Argoff 
The Dole Foundation
1819 H Street, NW, Suite 850
Washington, DC 20006
Phone: (202) 457-0318

Timothy L. Armstrong 
Center for Assessment and Demographic Studies
Gallaudet University
800 Florida Avenue, NE
Washington, DC 20002
Phone: (202) 651-5295

Davy Atelsek 
Agency for Health Care Policy and Research
Center for General Health Services and Extramural Research
Executive Office Center, Suite 502
2101 East Jefferson Street
Rockville, MD 20852-4908
Phone: (301) 227-8352

Tim Baden 
U.S. General Accounting Office
800 K Street, NW, Room 200
Washington, DC 20001
Phone: (202) 512-6541

Margaret Barlow 
GAO-OAAP
441 G Street, NW
Room 3019
Washington, DC 20548
Phone: (202) 275-0287

Sharon Barnartt 
Gallaudet University
Department of Sociology
800 Florida Avenue, NE
Washington, DC 20002
Phone: (202) 651-5000

Frederica Barrow 
Office of Medical Evaluation
Office of Disability/Social Security Adm.
Security West Bldg, Room 2080
Baltimore, MD 21241
Phone: (410) 966-8778

Andrew Batavia
Abt Associates Inc.
4800 Montgomery Lane
Suite 500
Bethesda, MD 20814
Phone: (301) 913-0500

Herbert M. Baum 
9825 Betterker Lane
Potomac, MD 20854
Phone: (301) 424-4548

Karen Beauregard 
Agency for Health Care Policy and Research
Center for General Health Services and Intramural Research
2101 E. Jefferson Street, Suite 500
Rockville, MD 20852
Phone: (301) 227-8400

Frederick Bedell 
8 Rolling Brook Drive
Clifton Park, NY 12065
Phone: (518) 371-3673

Laurel Beedon 
American Association of Retired Persons
601 E Street
Washington, DC 20049
Phone: (202) 434-3873

Karin Behe 
Public Health Services
Centers for Disease Control and Prevention
National Center for Health Statistics
6225 Belcrest Road
Hyattsville, MD 20782
Phone: (301) 436-7089

Senda Benaissa 
Demographic and Social Statistics Branch
UN Plaza 2
Room 1586
New York, NY 10017
Phone: (212) 963-4942 (TDD)

Ed Berkowitz 
George Washington University
Department of History
Washington, DC 20052
Phone: (202) 994-8174

Kristi Bleyer 
Commission on Mental & Physical Disability Law
American Bar Association
1800 M Street, NW
Washington, DC 20036
Phone: (202) 331-2282

Tinia M. Bradshaw 
Ohio General Assembly
Legislative Office of Education Oversight
2840 Leatherwood Dr
Columbus, OH 43224-2510
Phone: (614) 478-7554

Elysse Brewington 
Bill of Rights Hall, Room 316
310 Hofstra University
Hempstead, NY 11550
Phone: (516) 463-2755

Katja Bromen 
Demographic & Social Statistics Branch
UN Plaza 2, Room 1586
New York, NY 10017
Phone: (212) 963-4946

Dale Brown 
President's Committee on Employment of People with Disabilities
1331 F Street, NW
Washington, DC 20004
Phone: (202) 376-6200

Scott Campbell Brown 
U.S. Department of Education
Office of Special Education and Rehabilitative Services
400 Maryland Avenue, SW, Room 3520
Washington, DC 20202-2641
Phone: (202) 205-8117

Susanne BruyŠre
School of Industrial and Labor Relations
Cornell University
106 Extension
Ithaca, NY 14853-3901
Phone: (607) 255-7727

Diane N. Bryen
Institute on Disabilities/UAP
Temple University
Ritter Hall Annex-00400
13th Street and Cecil B. Moore Avenue
Philadelphia, PA 19122-4015
Phone: (215) 787-1356

Ed Burke 
Administration on Developmental Disabilities
200 Independence Avenue, SW
Washington, DC 20201
Phone: (202) 690-6590

J. Terry Carney 
U.S. Commission on Civil Rights
624 9th Street, NW
Washington, DC 20425
Phone: (202) 376-8073

Mary Chamie 
United Nations
DC2-1586
New York, NY 10017
Phone: (212) 963-4947

Larry S. Corder 
Center for Demographic Studies
Duke University
2117 Campus Drive
Durham, NC 27706
Phone: (919) 684-6126

Mary Cortina
National Center for Disability Services
201 I.U. Willets Road
Albertson, NY 11507
Phone: (516) 747-5400, ext. 1309

Scott Crosse 
WESTAT
1650 Research Boulevard
Rockville, MD 20850
Phone: (301) 294-3979

James J. Crosson 
U.S. General Accounting Office
441 G Street, NW, Room 5844
Washington, DC 20548
Phone: (202) 275-1636

Rich Daley 
Paralyzed Veterans of America
801 18th Street
Washington, DC 20006
Phone: (202) 872-1300

Susan Daniels
Administration on Developmental Disabilities
200 Independence Avenue, SW, Room 329D
Washington, DC 20201
Phone: (202) 690-6590

Randy Davis 
1819 H Street, Suite 850
Washington, DC 20006
Phone: (202) 457-0318

Evelyn Davis
Harlem Hospital
488 Lenox Avenue, #15H
New York, NY 10037
Phone: (212) 939-3129

David Dean
University of Richmond
E.C. Robins School of Business
Richmond, VA 23173
Phone: (804) 289-8559

Gerben DeJong 
National Rehabilitation Hospital
102 Irving Street, NW
Washington, DC 20010
Phone: (202) 269-8372

Ann Deschamps 
1819 H Street, Suite 850
Washington, DC 20006
Phone: (202) 457-0318

John R. Dunne 
U.S. Department of Justice
Civil Rights Division
10th Street & Constitution Avenue
Room 5643
Washington, DC 20530
Phone: (202) 514-2151

Sylvia Ellison 
National Institute for Child Health and Human Development
6100 Executive Boulevard, Room 8B13
Bethesda, MD 20892
Phone: (301) 496-1174

Robert P. Fain 
Institute for Human Development
University of Missouri-Kansas City
2220 Holmes Street, Room 309
Kansas City, MO 64108-2676
Phone: (816) 235-1777

Carolyn L. Feis
U.S. General Accounting Office
Program Evaluation & Methodology Division
441 G Street, NW, Room 5729
Washington, DC 20548
Phone: (202) 275-1864

Sylvia Feldman 
SERRAD, OPBE
Department of Education
Room 3031, FOB6
400 Maryland Avenue, SW
Washington, DC 20202-4100
Phone: (202) 401-3947

Robert C. Ficke 
WESTAT
1650 Research Blvd.
Rockville, MD 20850
Phone: (301) 294-2835

Kay Fitzgerald 
Tax Analysts
6830 N. Fairfax Drive
Arlington, VA 22213
Phone: (703) 533-4606

Anthony H. Flack 
National Council on Disability
1216 Foxboro Court
Norwalk, CT 06851
Phone: (203) 847-6803

William D. Frey
Disability Research Systems, Inc.
2500 Kerry Street, Suite 208
Lansing, MI 48912
Phone:  (517) 485-5599

Adele Furrie 
Post Censal Surveys
Statistics Canada
Tunney's Pasture
Jean Talon Building, Room 9C8
Ottawa, Ontario, Canada K1AOT6
Phone: (613) 951-4531

Donald Galvin
Disability Management and Rehabilitation Programs
Washington Business Group on Health
777 N. Capitol Street, NE, Suite 800
Washington, DC 20002
Phone: (202) 408-9320

John A. Gannon 
National Council on Disability
201 C Street, SE
Washington, DC 20003
Phone: (202) 547-0516

Hannah Gershon 
9 James Street
Brookline, MA 02146
Phone: (800) 439-2370

Adele Gorelick 
Administration on Developmental Disabilities
200 Independence Avenue, SW, Room 329D
Washington, DC 20201
Phone: (202) 690-6590

Reginald Govan 
Education and Labor Committee 
U.S. House of Representatives
Washington, DC 20515
Phone: (202) 225-3388

David Gray 
National Institutes of Health
National Center for Medical Rehabilitation Research
6120 Executive Blvd., Room 450 West
Rockville, MD 20852
Phone: (301) 402-2242

Carolyn Doppelt Gray 
Epstein Becker & Green, P.C.
Attorneys at Law
1227 25th Street, NW
Washington, DC 20037
Phone: (202) 861-1818

Nora Groce 
Yale University
Health Policy
7 Dennison Road, Room 308
Essex, CT 06426
Phone: (203) 767-8442

Carol Gwin 
The American Occupational Therapy Association
1383 Piccard Drive
P.O. Box 1725
Rockville, MD 20849-1725
Phone: (301) 948-9633

Lawrence D. Haber 
4550 Connecticut Avenue, NW
Washington, DC 20008
Phone: (202) 362-1405

Harlan Hahn 
University of Southern California
Department of Political Science
3518 Trousdale Parkway
Von Klein Schmidt, Room 307
Los Angeles, CA 90089-0044
Phone: (213) 740-1689

David Hakken 
SUNY Institute of Technology
P.O. Box 3050
Utica, NY 13504
Phone: (315) 792-7437

Roger L. Harrell 
Department of Health & Mental Hygiene
201 West Preston Street
Baltimore, MD 21201
Phone: (410) 225-5780

Howard Hayghe 
U.S. Department of Labor
Bureau of Labor Statistics
2 Massachusetts Avenue, NE, Room 4675
Washington, DC 20212
Phone: (202) 606-6378

Paul Hearne
The Dole Foundation
1819 H Street, NW, Suite 850
Washington, DC 20006-3603
Phone: (202) 457-0318

Gerry Hendershot 
National Center for Health Statistics
Division of Health Interview Statistics
6525 Belcrest Road
Hyattsville, MD 20782
Phone: (301) 436-7089

Maria Hewitt 
U.S. Congress
Office of Technology Assessment
Washington, DC 20510-8025
Phone: (202) 224-8713

Howard Hoffman 
Epidemiology, Statistics and Data System Branch, NIH
National Institute on Deafness and Other Communications Disorders
Building 31, Room 3C06
9000 Rockville Pike
Bethesda, MD 20892
Phone: (301) 402-1843

Carol Howland 
2323 South Shepherd, #1000
Houston, TX 77019
Phone: (713) 520-0232

Frederick D. Isler 
U.S. Commission on Civil Rights
Office of Civil Rights Evaluation
1121 Vermont Avenue, NW
Washington, DC 20425
Phone: (202) 376-8512

Andria Jensen 
National Academy of Social Insurance
233 9th Street, SE
Washington, DC 20003
Phone: (202) 452-8097

Allen Jenson 
The George Washington University
Center for Health Policy Research
2021 K Street, NW, Suite 800
Washington, DC 20052
Phone: (202) 296-6922

William Jones 
American Association of University Affiliated Programs
8630 Fenton Street, Suite 410
Silver Spring, MD 20910
Phone: (301) 588-8252

Tim Jones 
Fourth Sector Management
8200 Professional Place, Suite 112
Landover, MD 20785
Phone: (301) 577-7727

Michael Kane 
Pelavin Associates, Inc.
2030 M Street, NW, Suite 800
Washington, DC 20036
Phone: (202) 785-3308

John Kelly 
66 The Fenway, Apt. 22
Boston, MA 02146
Phone: (617) 536-5140

Evan Kemp 
Equal Employment Opportunity Commission
1801 L Street, NW
Washington, DC 20507
Phone: (202) 663-4001

Volcker Krause 
2532 Keystone Lane
Ann Arbor, MI 48103
Phone: (313) 663-8275

Mitchell P. LaPlante 
University of California at San Francisco
505 Parnassus Avenue, Box 0612
San Francisco, CA 94143
Phone: (415) 788-8915

Wilhelmina A. Leigh 
Joint Center for Political & Economic Studies
1090 Vermont Avenue, NW, Suite 1100
Washington, DC 20005-4961
Phone: (202) 789-3529

Paul Leung 
University of Illinois at Urbana-Champaign
Division of Rehabilitation Education Services
1207 South Oak Street
Champaign, IL 61820
Phone: (217) 333-1000

Dianne Lipsey 
1001 Connecticut Avenue, NW, Suite 435
Washington, DC 20036
Phone: (202) 659-2229

Simi Litvak 
The World Institute on Disability
510 16th Street, Suite 100
Oakland, CA 94612-1502
Phone: (510) 763-4100

Donald Lollar 
Health & Rehabilitation Psychologists
2045 Peachtree Road, Suite 300
Atlanta, GA 30309
Phone: (404) 351-5260

Perrianne Lurie
OVHSS/DHCS/MCB/NCHS
6525 Belcrest Road
Room 952, Presidential Building
Hyattsville, MD 20782
Phone: (301) 436-4216

Ruth Hall Lusher 
U.S. Department of Justice
Public Access Section
Civil Rights Division
1333 F Street, NW
Washington, DC 20035
Phone: (202) 434-9300

Elizabeth Macken 
Center for the Study of Language and Information
Ventura Hall
Stanford, CA 94305-4115
Phone: (415) 723-1224

Gregory March 
Department of Education
Mary E. Switzer Building
3rd and C Streets, SW, Room 3124
Washington, DC 20202
Phone: (202) 205-8441

Peter McCabe 
Department of Education
Office for Civil Rights
Mail Stop 1111
400 Maryland Avenue, SW, Room 5513 MES
Washington, DC 20202-1111
Phone: (202) 205-9567

Maureen A. McCloskey 
Paralyzed Veterans of America
801 Eighteenth Street, NW
Washington, DC 20006
Phone: (202) 872-1300

Martha McGaughey 
Children's Hospital
Training and Research Institute
300 Longwood Avenue
Boston, MA 02115
Phone: (617) 735-6211

J. Kenneth McGill 
Social Security Administration
Office of Disability
6401 Security Blvd, Rm. 545 Altmeyer
Baltimore, MD 21235
Phone: (410) 965-3988

William E. McLaughlin 
National Institute on Disability & Rehabilitation Research
U.S. Department of Education
Mary E. Switzer Building
330 C Street, SW
Washington, DC 20202
Phone: (202) 203-9193

Merle McPherson 
Bureau of Maternal and Child Health
Parklawn Building
5600 Fishers Lane, Room 9-48
Rockville, MD 20857
Phone: (301) 443-2350

Laurel Mendelson 
Institute for the Study of Developmental Disabilities
School of Public Health
University of Illinois
1640 W. Roosevelt Road
Chicago, IL 60608-1396
Phone: (312) 413-1647

Oral Miller 
National Council for the Blind
1155 15th Street, NW, Suite 720
Washington, DC 20005
Phone: (202) 467-5081

Els R. Nieuwenhuijsen 
Disability Research Systems, Inc.
2500 Kerry Street, Suite 208
East Lansing, MI 48823
Phone: (517) 485-5599

Margaret Nosek
2323 South Shepherd, #1000
Houston, TX 77019
Phone:  (713) 520-0232

Bonnie O'Day 
745 Somerville Avenue, Apt. 2
Somerville, MA 02193
Phone: (617) 776-2374

Karen Ott-Worrow 
Prentice Hall Law & Business
11 DuPont Circle, Suite 325
Washington, DC 20036
Phone: (202) 328-6662

James S. Panagis
Agency for Health Care Policy and Research
2101 East Jefferson Street, Suite 502
Rockville, MD 20852
Phone: (301) 227-8349

Susan Parker 
Social Security Administration
Office of Disability
Altmeyer Building
6401 Security Boulevard, Room 560
Baltimore, MD 21235
Phone: (410) 965-3424

Sandra Swift Parrino 
National Council on Disability
1331 F Street, NW, Suite 1050
Washington, DC 20004
Phone: (202) 272-2004

Donald L. Patrick 
University of Washington
School of Public Health & Community Medicine
Department of Health Services
Seattle, WA 98101
Phone: (206) 543-1144

John Perry 
Center for the Study of Language and Information
Ventura Hall
Stanford, CA 94305-4115
Phone: (415) 723-1275

David Pfeiffer 
Suffolk University
School of Management
8 Ashburton Place
Boston, MA 02108
Phone: (617) 573-8316

Penelope Pine 
Health Care Financing Administration
6325 Security Boulevard
Room 2502 Oak Meadows
Baltimore, MD 21207
Phone: (410) 966-7718

Paul J. Placek 
National Center for Health Statistics
6525 Belcrest Road, Room 840
Presidental Bldg.
Hyattsville, MD 20782
Phone: (301) 436-7032

Julie Racino 
2103 S. Geddes Street
Syracuse, NY 13207
Phone: (315) 422-2296

Mary M. Raether 
National Council on Disability
1205 Huntmaster Court
McLean, VA 22102
Phone: (703) 356-7822

Stephen Reiss
The Nisonger Center
The Ohio State University
McCampbell Hall
1581 Dodd Drive
Columbus, OH 43210-1296
Phone: (614) 292-8365

Virginia Reno 
National Academy of Social Insurance
233 9th Street, SE
Washington, DC 20003
Phone: (202) 452-8097

Philip Rizzi 
ICF
9300 Lee Highway
Fairfax, VA 22031
Phone: (703) 934-3727

Thomas S. Robinson 
Federal News Services, Inc.
P.O. Box 19481
Alexandria, VA 22320
Phone: (703) 548-5177

Alan Rothman 
Office of Policy Development and Research
U.S. Department of Housing and Urban Development
451 7th Street, SW
Washington, DC 20410
Phone: (202) 708-4370

Jessica Scheer 
National Rehabilitation Hospital
102 Irving Street, NW
Washington, DC 20010
Phone: (202) 269-8372

Ellen R. Schmidt
Department of Health & Mental Hygiene
201 West Preston Street
Baltimore, MD 21201
Phone: (301) 225-5780

Andrew Schoenberg 
University of Utah Health Science Center
Department of Physical Medicine and Rehabilitation
Salt Lake City, UT 84132
Phone: (801) 583-3193

Judy Schrag 
Office of Special Education Programs
Office of Special Education and Rehabilitative Services
MES Building, Room 3086 
400 Maryland Avenue, SW
Washington, DC 20202-2641
Phone: (202) 205-5507

Kay Fletcher Schriner 
Arkansas Research & Training Center in Vocational Rehabilitation
346 N. West Avenue
Fayetteville, AK 72701
Phone: (501) 575-3656

Neil Scott 
Center for the Study of Language and Information
Ventura Hall
Stanford, CA 94305-4115
Phone: (415) 725-3774

Katherine D. Seelman 
U.S. Department of Health & Human Services
Administration on Developmental Disabilities
200 Independence Avenue, SW, Room 329D
Washington, DC 20201
Phone: (202) 267-3846

Raymond Seltser 
Agency for Health Care Policy and Research
2101 East Jefferson Street, Suite 502
Rockville, MD 20852
Phone: (301) 227-8349

Helen E. Sherwood 
U.S. Department of Labor
Women's Bureau
200 Constitution Avenue, NW
Washington, DC 20210
Phone: (202) 219-8913

Rune J. Simeonsson 
The University of North Carolina at Chapel Hill
Frank Porter Graham Child Development Center
CB#8180, 105 Smith Level Road
Chapel Hill, NC 27599-8180
Phone: (919) 966-6634

Lori Simon-Rusinowitz 
University of Maryland
Center on Aging
National Elder Care Institute on Employment and Volunteerism
5916 Ramsgate Road
Bethesda, MD 20816
Phone: (301) 405-2548

Elvira Sisolak 
Equal Employment Opportunity
Office of General Counsel
1801 L Street, NW
Washington, DC 20507
Phone: (202) 663-4762

Craig Smith 
Committee for Purchase from People who are Blind or Severely 
Disabled
Crystal Square 5
1755 Jefferson Davis Highway, Suite 1107
Arlington, VA 22202-3509
Phone: (703) 603-7742

Don Stockford 
Department of Veterans Affairs
810 Vermont Avenue, NW
Washington, DC 20420
Phone: (202) 535-8408

Robert W. Stout 
U.S. Department of Transportation
Office of Regional Operations
Urban Mass Transportation Administration
400 Seventh Street, SW (UGM-30)
Washington, DC 20590-0001
Phone: (202) 366-4390

Marie Parker Strahan 
U.S. Department of Health and Human Services
Administration on Developmental Disabilities
200 Independence Avenue, SW, Room 349F
Washington, DC 20201
Phone: (202) 690-5905

Nobuyuki Takakora 
Embassy of Japan
2520 Massachusetts Avenue, NW
Washington, DC 20008
Phone: (202) 939-6700

Michel C. Thuriaux 
World Health Organization
CH-1211
Geneva, Switzerland
Phone: 011-202-791-2111

Jamil Toubbeh 
Indian Health Service
Sensory Disability Program 
2401 12th Street, NW
Albuquerque, NM 87102
Phone: (505) 766-1232

Mary Vencill 
Berkeley Planning Associates
440 Grand Avenue, Suite 500
Oakland, CA 94610-5085
Phone: (510) 465-7884

Lois M. Verbrugge 
University of Michigan
Institute of Gerontology
300 North Ingallis
Ann Arbor, MI 48109-2007
Phone: (313) 936-2103

A. Kent Waldrep, Jr.
National Council on Disability
The Princeton
14651 Dallas Parkway
Dallas, TX 75240
Phone: (214) 248-3179

Sylvia Walker 
Howard University
School of Education
Holy Cross Hall 100
2900 Van Ness Street, NW
Washington, DC 20008
Phone: (202) 806-8728

Thomas T. H. Wan
Virginia Commonwealth University
Department of Health Administration
MCV Campus
Box 203
Richmond, VA 23298-0203
Phone: (804) 786-1915

Sara Watson 
1100 17th Street, NW, Suite 330
Washington, DC 20036
Phone: (202) 785-8070

Jane West 
Jane West & Associates
4425 Walsh Street
Chevy Chase, MD 20815
Phone: (301) 718-0979

Deborah Wilkerson 
National Rehabilitation Hospital
102 Irving Street, NW
Washington, DC 20010
Phone: (202) 877-1744

Doris Wilson 
333 W. State Street, Apt. 10G
Trenton, NJ 08618

John Wright 
Paralyzed Veterans of America
801 18th Street, NW, Second Floor
Washington, DC 20006
Phone: (202) 416-7688

Ilene Zeitzer 
Social Security Administration
OAD/OD
6401 Security Boulevard
Suite 560 Altmeyer
Baltimore, MD 21235
Phone: (410) 965-7302

Irving Kenneth Zola
Brandeis University
Department of Sociology
Waltham, MA 02254
Phone: (617) 736-2645
Appendix C:  Speaker List

Michael Adams 
Centers for Disease Control
Division of Birth Defects and Developmental Disabilities
National Center for Environmental Health and Injury
1600 Clifton Road
Atlanta, GA 30333
Phone: (404) 488-4706

Michelle Adler 
U.S. Department of Health and Human Services
Office of the Assistant Secretary for Planning and Evaluation
200 Independence Avenue, SW, Room 424E
Washington, DC 20201
Phone: (202) 690-6172

Barbara Altman 
Agency for Health Care Policy and Research
NMES, Intermural Division
5600 Fishers Lane, Room 18A 31
Rockville, MD 20857
Phone: (301) 227-8400

Andrew Batavia 
Abt Associates Inc.
4800 Montgomery Lane
Suite 500
Bethesda, MD 20814
Phone: (301) 913-0500

Frederick Bedell 
8 Rolling Brook Drive
Clifton Park, NY 12065
Phone: (518) 371-3673

Scott Campbell Brown 
U.S. Department of Education
Office of Special Education and Rehabilitative Services
Office of Special Education Programs
400 Maryland Avenue, SW, Room 3520
Washington, DC 20202-2641
Phone: (202) 205-8117

Susanne BruyŠre 
Cornell University
School of Industrial and Labor Relations
106 Extension
Ithaca, NY 14853-3901
Phone: (607) 255-7727 

Mary Chamie 
United Nations
DC2-1586
New York, NY 10017
Phone: (212) 963-4947

Evelyn Davis
Harlem Hospital
488 Lenox Avenue #15H
New York, NY 10037
Phone: (212) 939-3129

Gerben DeJong
National Rehabilitation Hospital
102 Irving Street, NW
Washington, DC 20010
Phone: (202) 269-8372

David Dean 
University of Richmond
E.C. Robins School of Business
Richmond, VA 23173
Phone: (804) 289-8559

John R. Dunne 
U.S. Department of Justice
Civil Rights Division
10th Street and Constitution Avenue
Room 5643
Washington, DC 20530
Phone: (202) 514-2151

Carolyn L. Feis 
U.S. General Accounting Office
Program Evaluation & Methodology Division
441 G Street, NW, Room 5729
Washington, DC 20548
Phone: (202) 275-1864

Anthony H. Flack 
National Council on Disability
1216 Foxboro Court
Norwalk, CT 06851
Phone: (203) 847-6803

William D. Frey 
Disability Research Systems, Inc.
2500 Kerry Street, Suite 208
Lansing, MI 48912
Phone: (517) 485-5599

Adele Furrie 
Post Censal Surveys
Statistics Canada
Tunney's Pasture
Jean Talon Building, Room 9C8
Ottawa, Ontario, Canada K1AOT6
Phone: (613) 951-4531

John A. Gannon 
National Council on Disability
201 C Street, SE
Washington, DC 20003
Phone: (202) 547-0516

David Gray 
National Institutes of Health
National Center for Medical Rehabilitation Research
6120 Executive Blvd., Room 450 West
Rockville, MD 20852
Phone: (301) 402-2242

Nora Groce 
Yale University
Health Policy
7 Dennison Road, Room 308
Essex, CT 06426
Phone: (203) 767-8442

Harlan Hahn 
University of Southern California
Department of Political Science
3518 Trousdale Parkway
Von Klein Schmidt, Room 307
Los Angeles, CA 90089-0044
Phone: (213) 740-1689

Gerry Hendershot
National Center for Health Statistics
Division of Health Interview Statistics
6525 Belcrest Road
Hyattsville, MD 20782
Phone: (301) 436-7089

Carol Howland 
2323 South Shepherd, #1000
Houston, TX 77019
Phone: (713) 520-0232

Mitchell P. LaPlante 
University of California at San Francisco
505 Parnassus Avenue, Box 0612
San Francisco, CA 94143
Phone: (415) 788-8915

Paul Leung 
University of Illinois at Urbana-Champaign
Division of Rehabilitation Education Services
1207 South Oak Street
Champaign, IL 61820
Phone: (217) 333-1000

Simi Litvak 
The World Institute on Disability
510 16th Street, Suite 100
Oakland, CA 94612-1502
Phone: (510) 763-4100

William E. McLaughlin 
National Institute on Disability & Rehabilitation Research
U.S. Department of Education
Mary E. Switzer Building
330 C Street, SW
Washington, DC 20202
Phone: (202) 203-9193

Margaret Nosek 
2323 South Shepherd, #1000
Houston, TX 77019
Phone: (713) 520-0232

Sandra Swift Parrino 
National Council on Disability
1331 F Street, NW, Suite 1050
Washington, DC 20004
Phone: (202) 272-2004

Donald L. Patrick 
University of Washington
School of Public Health & Community Medicine
Department of Health Services
Seattle, WA 98101
Phone: (206) 543-1144

David Pfeiffer 
Suffolk University
School of Management
8 Ashburton Place
Boston, MA 02108
Phone: (617) 573-8316

Mary M. Raether 
National Council on Disability
1205 Huntmaster Court
McLean, VA 22102
Phone: (703) 356-7822

Andrew Schoenberg 
University of Utah Health Science Center
Department of Physical Medicine and Rehabilitation
Salt Lake City, UT 84132
Phone: (801) 583-3193

Katherine D. Seelman 
U.S. Department of Health & Human Services
Administration on Developmental Disabilities
200 Independence Avenue, SW, Room 329D
Washington, DC 20201
Phone: (202) 267-3846

Raymond Seltser 
Agency for Health Care Policy & Research
2101 East Jefferson Street, Suite 502
Rockville, MD 20852
Phone: (301) 227-8349

Michel C. Thuriaux 
World Health Organization
CH-1211
Geneva, Switzerland
Phone: 011-202-791-2111

Lois M. Verbrugge
University of Michigan
Institute of Gerontology
300 North Ingallis
Ann Arbor, MI 48109-2007
Phone: (313) 936-2103

A. Kent Waldrep, Jr. 
National Council on Disability
The Princeton
14651 Dallas Parkway
Dallas, TX 75240
Phone: (214) 248-3179

Sylvia Walker 
Howard University
School of Education
Holy Cross Hall 100
2900 Van Ness Street, NW
Washington, DC 20008
Phone: (202) 806-8727

Jane West
Jane West & Associates
4425 Walsh Street
Chevy Chase, MD 20815
Phone: (301) 718-0979

Irving Kenneth Zola
Brandeis University
Department of Sociology
Waltham, MA 02254
Phone: (617) 736-2645
Appendix D:  The National Council on Disability:
A Brief Description

Overview and Purpose
The National Council on Disability (NCD) is an independent 
federal agency led by 15 members appointed by the President of 
the United States and confirmed by the U.S. Senate.  It was 
initially established in 1978 as an advisory board within the 
Department of Education (Public Law 95-602).  The Rehabilitation 
Act Amendments of 1984 (Public Law 98-221) transformed NCD into 
an independent agency. 

The overall purpose of NCD is to promote policies, programs, 
practices, and procedures that guarantee equal opportunity for 
all individuals with disabilities, regardless of the nature or 
severity of the disability; and to empower individuals with 
disabilities to achieve economic self-sufficiency, independent 
living, and inclusion and integration into all aspects of 
society.

Specific Duties
The current statutory mandate of NCD includes the following:
  Reviewing and evaluating, on a continuing basis, policies, 
programs, practices, and procedures concerning individuals with 
disabilities conducted or assisted by federal departments and 
agencies, including programs established or assisted under the 
Rehabilitation Act of 1973, as amended, or under the 
Developmental Disabilities Assistance and Bill of Rights Act; and 
all statutes and regulations pertaining to federal programs that 
assist such individuals with disabilities in order to assess the 
effectiveness of such policies, programs, practices, procedures, 
statutes, and regulations in meeting the needs of individuals 
with disabilities.
  Reviewing and evaluating, on a continuing basis, new and 
emerging disability policy issues affecting individuals with 
disabilities at the federal, state, and local levels, and in the 
private sector, including the need for and coordination of adult 
services, access to personal assistance services, school reform 
efforts and the impact of such efforts on individuals with 
disabilities, access for health care, and policies that operate 
as disincentives for the individuals to seek and retain 
employment.
  Making recommendations to the President, the Congress, the 
Secretary of Education, the Director of NIDRR, and other 
officials of federal agencies, concerning ways to better promote 
equal opportunity, economic self-sufficiency, independent living, 
and inclusion and integration into all aspects of society for 
Americans with disabilities.
  Providing the Congress, on a continuing basis, advice, 
recommendations, legislative proposals, and any additional 
information that the Council or the Congress deems appropriate.  
  Gathering information about the implementation, effectiveness, 
and impact of the ADA of 1990 (42 U.S.C. 12101 et seq.).
  Advising the President, the Congress, the Commissioner of the 
Rehabilitation Services Administration, the Assistant Secretary 
for Special Education and Rehabilitative Services within the 
Department of Education, and the Director of NIDRR on the 
development of the programs to be carried out under the 
Rehabilitation Act of 1973, as amended.
  Providing advice to the Commissioner with respect to the 
policies of and conduct of the Rehabilitation Services 
Administration.
  Making recommendations to the Director of NIDRR on ways to 
improve research, service, administration, and the collection, 
dissemination, and implementation of research findings affecting 
persons with disabilities.
  Providing advice regarding priorities for the activities of 
the Interagency Disability Coordinating Council and reviewing the 
recommendations of such Council for legislative and 
administrative changes to ensure that such recommendations are 
consistent with the purposes of the Council to promote the full 
integration, independence, and productivity of individuals with 
disabilities.
  Preparing and submitting to the President and the Congress a 
report entitled National Disability
Policy: A Progress Report on an annual basis.
  Preparing and submitting to the Congress and the President a 
report containing a summary of the activities and accomplishments 
of the Council on an annual basis.

Population Served and Current Activities
Although many government agencies deal with issues and programs 
affecting people with disabilities, NCD is the only federal 
agency charged with addressing, analyzing, and making 
recommendations on issues of public policy that affect people 
with disabilities, regardless of age, disability type, perceived 
employment potential, economic need, specific functional ability, 
status as a veteran, or other individual circumstance.  NCD 
recognizes its unique opportunity to facilitate independent 
living, community integration, and employment opportunities for 
people with disabilities by ensuring an informed and coordinated 
approach to addressing the concerns of persons with disabilities 
and eliminating barriers to their active participation in 
community and family life.

NCD plays a major role in developing disability policy in 
America.  In fact, it was the Council that originally proposed 
what eventually became the Americans with Disabilities Act of 
1990.  Our present list of key issues includes personal 
assistance services, health care reform, the inclusion of 
students with disabilities in high-quality programs in typical 
neighborhood schools, equal employment opportunity, community 
housing, monitoring the implementation of the ADA, improving 
assistive technology, and ensuring that persons with disabilities 
who are members of minority groups fully participate in society.