DISABILITY RESEARCH:  ACCOMPLISHMENTS AND RECOMMENDATIONS FOR 
FEDERAL COORDINATION












A Report to the President and Congress

from the

Interagency Committee on Disability Research













Katherine D. Seelman, Ph.D., Chair and Director of
The National Institute on Disability and Rehabilitation Research
Office of Special Education and Rehabilitative Services
U.S. Department of Education



ACKNOWLEDGMENTS


Paul Ackerman, Ph.D. of the National Institute on Disability and 
Rehabilitation Research (NIDRR) serves as staff director for the 
Interagency Committee on Disability Research (ICDR). 

Jane West, Ph.D. drafted the first report for the ICDR under 
contract to NIDRR.

The members of the ICDR reviewed the report; several, like Mr. 
Larry Burt of the Centers for Disease Control and Prevention, Dr. 
Cille Kennedy of the National Institute of Mental Health and Dr. 
Nancy Eustis of the Department of Health and Human Services, 
contributed rewrites to the text at the suggestion of the 
members.

Dr. Betty Jo Berland, Dr. Richard Melia and Dr. Frank Corrigan of 
NIDRR offered advice on clarification, consolidation and editing.

Conwal Incorporated provided technical assistance to the ICDR, 
developed the Catalog of Information Sources on Disability 
Research Among Selected ICDR Member Agencies found in Appendix E 
of this report, and produced the final document.

To all these and the others who contributed "behind the scenes", 
the Chair of the ICDR is extremely grateful.




TABLE OF CONTENTS


Executive Summary1

Introduction3

I.   The Interagency Committee on Disability Research:
     An Overview...........................................5
 
II.  Disability Research: Current Trends..................10

III. Medical Rehabilitation...............................12

IV.  Technology...........................................15

V.   Employment20

VI.  Data for Policy Development and Accountability.......24
 
References................................................32

Appendix A:Statute Authorizing the Interagency Committee
             on Disability Research

Appendix B:Members of the ICDR

Appendix C:Agendas of 1995 ICDR Meetings

Appendix D:Summary of Public Forum on Disability
             Research, June 7, 1995

Appendix E:Catalog of Information Sources on Disability Research
             Among Selected ICDR Member Agencies





EXECUTIVE SUMMARY


The scope and content of disability research are expanding 
rapidly -- so rapidly that Federal efforts to fund, promote and 
disseminate this research are greatly in need of coordination and 
collaboration.  This is the purpose of the Interagency Committee 
on Disability Research (ICDR).  This Committee, whose authority 
derives from Section 203 of the Rehabilitation Act of 1973 as 
amended, is the vehicle established to help all Federal agencies 
who fund disability research:

u   avoid duplication of effort;

u   identify gaps in research;

u   identify opportunities for collaboration; 

u   develop mechanisms for collaboration; 

u   promote synergy through combined resources; and

u   share information, activities and research findings in order 
    to build a more systematic and cohesive Federal effort.

This report is the result of the ICDR deliberations, public 
forums, and planning to achieve the above goals.  Following the 
statutory mandate, the ICDR met quarterly in 1995, discussed the 
research efforts of all twenty five agencies represented (ten 
agencies mandated by the statute with an additional fifteen 
relevant agencies invited), held a public forum to elicit the 
opinions of non-governmental agencies, reviewed the issues with 
representatives of the disability community, and drafted and 
cleared this Annual Report to Congress and the President.

The full recommendations of the ICDR may be found in the pages 
following.  The Executive Summary, however, will briefly 
summarize the recommendations to highlight the key concepts found 
therein.  The recommendations are not presented merely to promote 
discussion; they are recommendations on which the ICDR is 
prepared to act.

These recommendations are the basis for the continuing agenda of 
all Federal member agencies of this Committee.  

Disability Research Should be More Widespread in Government: Any 
research which addresses general populations should include the 
disabled population, particularly in research collecting data on 
gender and race/ethnicity which is used in
civil rights policy.  (Recommendations 1,2)

Special Content Areas Need More Study: The content of disability 
research is so broad that it cannot be comprehensively addressed 
in ICDR meetings.  Therefore, the ICDR members suggest the 
formation of special task forces and subcommittees on medical 
rehabilitation, technology (including universal design), and the 
employment of persons with disabilities.  These new working 
groups will work parallel to the highly successful Subcommittee 
on Disability Statistics, now extant.  (Recommendations 3,4,5,6)

Current Federal Efforts in Large Scale Disability Research Should 
be Strengthened: The ICDR supports the continued use of the long 
form of the Decennial census to gather disability data.  It also 
seeks continual dialogue with the Department of Health and Human 
Services Data Council, particularly as it monitors the National 
Health Information Survey.  (Recommendations 7,8,9)

More Standardized Definitions of Disability and Disability 
Populations are Needed: The ICDR will seek to lead Federal 
Agencies in more common definitions of disability in the research 
setting -- definitions that will produce truly comparable 
research.  The ICDR will also seek to disseminate these 
definitions globally in an effort to make international research 
results more relevant to U.S. populations.  (Recommendation 10) 


INTRODUCTION


The scope and content of disability research are expanding 
rapidly.  Two developments have converged to promote this 
progress.  First, remarkable breakthroughs in biomedical 
research, science and technology have enabled people with 
disabilities to live longer lives and to live them more 
independently than ever before.  Second, people with disabilities 
have established themselves as an empowered constituency to 
protect their civil rights and ensure equal access to American 
society.  This empowerment is best exemplified by the 1990 
enactment of the Americans with Disabilities Act.  The 
intersection of progress in scientific research and the 
empowerment of people with disabilities has generated momentum 
for expanded disability research that will propel us well into 
the next century. 

This expansion, perhaps an evolution of disability research, has 
important implications for coordination and collaboration among 
federal agencies.  The number of agencies involved in activities 
related to disability research and the number of programs and 
policies that support or influence disability research are 
considerable.  In part, this is the result of disability rights 
policy that requires accessibility for people with disabilities 
to all aspects of society.  Such policy invokes a research agenda 
that is broader than ever before.

The benefits of interagency coordination and collaboration are 
many.  They include:

u   Avoiding duplication of effort

u   Identifying gaps in research
    
u   Identifying opportunities for collaboration
    
u   Developing mechanisms for collaboration

u   Promoting synergy through combined resources

u   Sharing information and activities and research findings in 
    order to build a more systematic and cohesive federal effort

u   Providing an identifiable entity that can disperse 
    information to consumers, the private sector, policy makers 
    and the public about government-wide activities.  

The current tenor of federal policy development is one of 
consolidation and streamlining.  Calls for more efficient 
government and better accountability often
can be addressed by effective interagency collaboration and 
coordination. 

This Report to Congress and the President is the first report 
submitted under Section 203 of the Rehabilitation Act of 1973 in 
six years.  Revitalizing the ICDR is in the best interests of all 
Federal agencies having disability responsibility, all 
researchers, and all consumers of disability research.  The 
results of the ICDR deliberations, contained in this report, are 
consistent with efforts of reinvention, and more efficient 
utilization of resources.

We have not attempted to cover all of the domains of disability 
research; rather we have focused on four which could benefit from 
enhanced coordination and collaboration activity -- medical 
rehabilitation, technology, employment and policy development and 
accountability data.  Subsequent reports will address other areas 
of disability research, such as housing, transportation and 
education.  

Sources of information for this report include presentations from 
the June 7, 1995 Public Forum on Disability Research, documents 
and reports provided by ICDR members and the deliberations of the 
ICDR members, both in the quarterly meetings and in ad hoc Task 
Groups.

This report documents the proactive efforts of all Federal 
agencies which either produce or consume disability research data 
to make that data useful in efforts to improve equality for all 
Americans with disabilities.



Katherine D. Seelman, Ph.D.
Director, NIDRR
Chair, ICDR




I.   The Interagency Committee On Disability Research:  An 
Overview


Statutory Authority

The Interagency Committee on Disability Research (ICDR) is 
authorized by Section 203 of the Rehabilitation Act of 1973, as 
amended, 29 U.S.C. 761b.  The statute establishes the ICDR with 
the mission of promoting coordination and cooperation among 
Federal departments and agencies conducting rehabilitation 
research programs.  The Director of the National Institute on 
Disability and Rehabilitation Research (NIDRR) is designated to 
chair the ICDR.

The ICDR is mandated to receive input from individuals with 
disabilities and/or their representatives as it identifies, 
assesses and seeks to coordinate all Federal programs, activities 
and projects and plans related to "research related to 
rehabilitation of individuals with disabilities".  An annual 
report to the President and the appropriate committees of the 
Congress is required to make recommendations about the 
coordination of policy and the development of objectives and 
priorities for federal programs related to disability and 
rehabilitation research.  Appendix A contains a copy of the 
statute authorizing the ICDR.


History of the ICDR

The ICDR has functioned for over a decade, shifting in 
orientation and emphasis depending on the needs of member 
agencies, the requirements of the statutory mandate and the 
science and policy priorities of disability and rehabilitation 
research.  In the past the ICDR has engaged in a number of 
activities including carrying out congressionally mandated 
studies; forming subcommittees to deliberate and make 
recommendations about pressing issues; recommending regulations; 
providing feedback to agencies on long range plans and 
priorities; sharing and coordinating research agendas and 
results; developing subcommittees that served multiple functions 
for numerous agencies and utilizing interagency agreements to 
promote interagency research planning and agenda setting.

For six years, however, the ICDR has been relatively inactive.  
Now it has been reconstituted and reinvigorated.  This report is 
its product.


Orientation of The ICDR of 1995

The Director of NIDRR chairs the ICDR.  In the ICDR's first 
meeting on February 16, 1995, Dr. Katherine Seelman articulated 
her vision for the ICDR.

The ICDR will function as a forward-thinking entity devoted to 
promoting research that will support people with disabilities in 
meeting the Nation's goals as articulated in the Americans with 
Disabilities Act:  assuring equality of opportunity, full 
participation, independent living and economic self-sufficiency.  
The Committee will identify the key areas of policy development 
in the next decade and determine research priorities in relation 
to policy needs.  The Committee will be mindful of current and 
future mainstream and disability interfaces so that global and 
National trends in economics, demographics, science and 
technology are reflected in Committee activities and 
deliberations.  The Committee will build on the precedents of the 
past in undertaking its activities. 

In keeping with the tone set by Dr. Seelman, the ICDR has 
considered disability research broadly, involving agencies that 
fund traditional medical rehabilitation as well as agencies that 
use data generated by the federal government for enforcement and 
service delivery purposes.  The ICDR is concerned about all 
people with disabilities -- mental, physical and sensory -- 
across the life span, from birth to death.  The membership and 
activities of the ICDR reflect this broad orientation. 


Members of the ICDR

The authorizing statute for the ICDR lists individuals who are 
required to be members of the ICDR.  They are:

   Chair:      NIDRR Director
   Members:Commissioner of the Rehabilitation Services
                 Administration 
               Assistant Secretary for the Office of Special
                 Education and Rehabilitative Services
               Secretary of Education
               Secretary of Veterans Affairs
               Director of the National Institutes of Health
               Director of the National Institute of Mental
                 Health
               Administrator of the National Aeronautics and
                 Space Administration
               Secretary of Transportation
               Assistant Secretary of the Interior for
                 Indian Affairs
               Director of the Indian Health Service
               Director of the National Science Foundation
               
Since numerous other federal agencies play important roles in 
disability research, either as producers of research or consumers 
of research results, the membership of the Committee was expanded 
considerably by invitation of the chair.  Appendix B provides a 
full list of ICDR members.  Additional agencies represented on 
the ICDR include:

Department of Justice, Civil Rights Division
Department of Transportation
Department of Housing and Urban Development
The Equal Employment Opportunity Commission
Centers for Disease Control and Prevention
  Disabilities Prevention Program
  National Center for Health Statistics
Social Security Administration, Office of Disability
Agency for International Development
Department of Labor: 
  Bureau of Labor Statistics
Department of Commerce:
  Bureau of the Census
President's Committee on Employment of People
  with Disabilities
National Council on Disability
President's Committee on Mental Retardation
Architectural and Transportation Barriers
  Compliance Board
Department of Health and Human Services
  National Center on Medical Rehabilitation
    Research
  National Institute on Deafness and Other
    Communication Disorders
  Administration on Developmental Disabilities
  Assistant Secretary for Policy and Evaluation
Department of Energy
Department of Defense
Department of Education, Office of Special
  Education Programs

The authorizing statute for the ICDR requires the Committee to 
have input from people with disabilities and their 
representatives.  One way the ICDR fulfilled this requirement was 
by inviting representatives of the Consortium for Citizens with 
Disabilities (CCD) to participate in ICDR meetings and 
activities.  The CCD is a Washington based umbrella organization 
whose members include over 100 organizations representing people 
with disabilities and those who provide services to
people with disabilities.  In addition, a number of 
representatives of agencies on the ICDR are individuals with 
disabilities who work in government agencies. 


1995 Activities of the ICDR

The ICDR met four times in 1995.  The first meeting, held on 
February 16, brought together representatives of member agencies, 
many of them being introduced to the ICDR for the first time.  At 
this meeting, agencies provided an overview of their activities 
related to disability research.

On June 7, 1995, as part of its second meeting, the ICDR held a 
public forum on disability research.  The purpose of the forum 
was to gather information from researchers and individuals with 
disabilities about the accomplishments and status of disability 
research in America and recommendations for the future.  Domains 
of research addressed in the forum were technology, employment, 
independent living and policy development and accountability 
data.  Twenty two individuals from around the country presented 
comments.  Sen. Bill Frist (R-TN), Chair of the U.S. Senate 
Subcommittee on Disability Policy, and a heart transplant surgeon 
with an extensive research background himself, attended the forum 
to make remarks.  He noted:

First hand, I know that research takes time.  I know that 
research is messy.  I know that research is not cheap.  I know 
that research requires team work.  I also know that if we are 
deliberate, if we are patient, if we are persistent, if we share 
what we learn, the quality of life we are able to offer 
individuals with disabilities will be changed for the better.

A summary of remarks made at the public forum (and integrated 
into the deliberations of the ICDR) is in Appendix D.

The third meeting, on September 14, featured a presentation of 
rehabilitation research activities conducted by the Veterans 
Administration.  The fourth meeting, on December 14, featured a 
presentation by the Office of the Assistant Secretary for 
Planning and Evaluation of HHS.  Agendas from the meetings are in 
Appendix C.


Catalog of Funding Sources for Disability Research

During the course of 1995, the ICDR undertook the development of 
a catalog of selected funding sources for disability research, 
which appears in Appendix E.  ICDR member agencies were asked to 
provide information about their agencies and their role in 
disability research.  In addition, they provided information 
about
funding priorities, published reports on funded research and 
resources for further information.  This document will be 
disseminated to government agencies by the ICDR and made widely 
available through the National Rehabilitation Information Center 
(NARIC), a national disability and rehabilitation library and 
information center funded by NIDRR.  It is intended to assist 
researchers, government agencies, and people with disabilities in 
gaining access to information about government funded research 
and research results.  It will also be a resource to the ICDR as 
it seeks to identify, update and coordinate disability research 
activities throughout the Federal government.


Subcommittee on Disability Statistics

The ICDR currently has one subcommittee -- the Subcommittee on 
Disability Statistics.  This subcommittee, which has been highly 
productive, has over 100 participants who frequently communicate 
via E-mail and meet once a month to share information and discuss 
issues related to disability statistics.  This Subcommittee has 
been persistently active for more than ten years, providing an 
important mechanism for effective interagency exchange, dialogue, 
collaboration and coordination.  Further description of the 
activities of this Subcommittee is in Section V of this report, 
Data for Policy Development and Accountability. 


II.  Disability Research: Current Trends

One of the most profound influences on both the process and the 
content of research in recent years has been the increased 
involvement of people with disabilities in all aspects of 
research, including setting the research agenda, developing 
research questions, participating in decision making about what 
projects are funded by government agencies, participating in 
carrying out the research as researchers, advisors and 
consultants, testing research ideas and providing feedback to 
researchers and meaningfully analyzing research findings.   

This increased participation has had two important results.  
First, the research agenda is broader than it has ever been as 
people with disabilities increasingly bring parameters of 
independent living to the research agenda.  Second, research is 
having a more significant impact on the daily lives of people 
with disabilities.  Nowhere is this more evident than in the area 
of technology.
 
Chair of the ICDR, Dr. Seelman, emphasizes the importance of 
rethinking disability research in the context of the principles 
articulated by the ADA.  These principles challenge the research 
community to ensure that people with disabilities are active 
partners in the research process.  She noted:

For too many years research was something done "to" people with 
disabilities.  Now we are about the business of ensuring 
partnerships between researchers and the ultimate beneficiaries 
of that research -- people with disabilities (1995).

All member agencies of the ICDR articulate the vision of a strong 
scientific base of knowledge that ultimately serves the consumer 
more efficiently, economically and effectively.


Recommendation #1

Federal agencies should, as a matter of policy, ensure that 
people with disabilities are involved integrally in all aspects 
of federally conducted or sponsored disability research 
activities.

Considerable strides have been made in achieving this goal in 
recent years.  People with disabilities are involved in research 
more than ever before.  People with disabilities, the ultimate 
"customers" of disability research, seek data that truly reflects 
their experience and their needs.  The involvement of persons 
with disabilities in the research process, however, is only 
beginning to influence research and provide alternate hypotheses 
to findings.  Emphasis must continue to be placed
on the involvement of people with disabilities in all aspects of 
disability research.  Member agencies have agreed to this 
principle. 


Recommendation #2

Federal data collection agencies should include breakdowns by 
disability in all Federal data collections on populations 
collecting data on gender and race/ethnicity.  The definition for 
disability provided in the Americans with Disabilities Act (ADA) 
should provide the basis for such data collection.

Persons with disabilities are protected by Federal civil rights 
laws such as the Americans with Disabilities Act (ADA) and the 
Individuals with Disabilities Education Act.  Thus, there is no 
valid reason not to include these populations when collecting 
data on persons who may require civil rights protection.  The ADA 
offers guidance in disability definition, recognizing it as a 
social phenomenon.  Any difficulties in the formation of data 
gathering instruments to collect disability information can be 
overcome with the consultation and technical assistance available 
to data-collecting agencies by the ICDR and its subcommittees.  


III. Medical Rehabilitation

Medical rehabilitation involves the study of how the functions of 
children and adults with disabilities can be restored, replaced 
or enhanced, leading to meaningful work and social independence.  
The field of rehabilitation was organized following World War I 
in response to veterans returning home with disabilities.  World 
War II veterans prompted further developments in rehabilitation.  
The polio epidemic of the 1940's and 1950's provided additional 
impetus for developing rehabilitation and broadened its 
population to include women and children with disabilities.  
Medical rehabilitation has been characterized by an 
interdisciplinary approach to treatment addressing the medical 
and psychosocial needs of the individual in the context of social 
roles and societal settings.  

ICDR Member Activities

Numerous federal agencies currently are involved directly in 
medical rehabilitation research.  Key agencies include the 
following:

National Institute on Disability and Rehabilitation Research 
(NIDRR), Office of Special Education and Rehabilitative Services, 
Department of Education.  NIDRR's medical rehabilitation research 
focuses on the functional aspects of disability rather than the 
aspects of etiology and basic science.  NIDRR research focuses on 
the integration of people with disabilities into society.  Model 
centers in spinal cord injury, brain injury and burns are funded.

National Center for Medical Rehabilitation Research (NCMRR), 
National Institute of Child Health and Human Development, 
National Institutes of Health, Department of Health and Human 
Services.  NCMRR conducts, fosters and supports research on 
restoring, replacing or enhancing the functional capability of 
children and adults with disabilities resulting from an injury, 
disease, congenital disorder or the aging process.  Scientists 
study the behavioral and biomedical processes involved with 
rehabilitation.

Department of Veterans Affairs (VA).  The VA conducts a 
Rehabilitation Research and Development (Rehab R&D) program that 
supports research intended to maximize the abilities and 
functional independence of physically and mentally disabled 
veterans.  Research includes development and evaluation of 
devices for use by veteran patients, such as artificial limbs, 
orthoses, mobility aids including wheelchairs and automotive 
adaptive equipment and  hearing, visual and communication aids.  
All VA research is conducted in VA hospitals by VA staff.

Although these three Federal agencies serve as the focal points 
for medical rehabilitation research in government, other agencies 
also conduct significant
research in this area: components of the Centers for Disease 
Control and Prevention; the Department of Health and Human 
Services; twelve additional institutes of the National Institutes 
of Health; and components of the Social Security Administration, 
the Department of Transportation, the Department of Energy, the 
Department of Defense, and the Food and Drug Administration. 

Recent developments in technology and engineering have added new 
dimensions to the restoration, replacement or enhancement of 
functioning in persons with disabilities.  These developments 
have been profound enough to suggest that rehabilitation should 
now be considered a branch of science.  Congress, in fact, 
charged the Institute of Medicine to study this developing 
discipline and make recommendations about its future.  The plan 
for that strategy was described to the ICDR members, and is 
described below.

Institute of Medicine Study on Rehabilitation Science and 
Engineering

In response to a Congressional request, the Office of the 
Assistant Secretary for Health of the Department of Health and 
Human Services asked the Institute of Medicine (IOM), a branch of 
the National Academy of Science, to convene a committee to review 
federal research programs in rehabilitation science and 
engineering.  The members of the Committee on Assessing 
Rehabilitation Science and Engineering were named in early 1996 
and the final report will be issued in 1997.  The Committee will:

u   Assess and evaluate current content, quality and adequacy of 
    the knowledge base in rehabilitation science and engineering.

u   Evaluate the utility of current rehabilitation models as they 
    reflect the interdisciplinary and multidisciplinary nature of 
    rehabilitation and the interaction of the person with the 
    environment.

u   Describe and recommend mechanisms for effective transfer and 
    clinical translation of scientific findings, advances and 
    information that will promote health and health care for 
    people with disabilities and potentially disabling 
    conditions.

u   Review and critically evaluate current federal programmatic 
    efforts in rehabilitation science and engineering as to their 
    productivity, relevance and coordination, including a 
    description of potential organizational and administrative 
    options for a more effective national program (Institute of 
    Medicine, 1995).


Interagency Concerns and Recommendations:

ICDR members believe that there is considerable opportunity for 
collaboration and coordination among the many agencies involved 
in medical rehabilitation research.  Because the organizations 
involved approach medical rehabilitation from the vantage points 
of their agencies' focus or customers, there are, predictably, 
numerous definitions of medical rehabilitation.  Most definitions 
overlap in context, but differ in specificity or the use of the 
terms of definition.

Representatives of NIDRR and NCMRR collaborated during 1995 to 
discuss the potential for further collaboration and coordination 
for federal agencies involved in medical rehabilitation research.  
The following recommendations evolved from these deliberations.


Recommendation #3

The ICDR should establish a Subcommittee on Medical 
Rehabilitation, with representatives from key agencies involved 
in medical rehabilitation research, to: (1) survey all medical 
rehabilitation research projects; (2) identify needs for 
additional research; (3) identify areas of potential joint 
funding; and (4) recommend dissemination strategies for all 
medical rehabilitation research to wider audiences.

Preliminary work by ICDR members identifies a list of potential 
topics for meetings and areas of collaboration.  Linking members 
by E-mail to communicate easily and share information is an 
initial goal.  Reporting annually to the full ICDR on the state 
of medical rehabilitation in the federal government is another 
goal.  The extent of differences and commonalities in terminology 
is identified as an agenda item, as is training of scientists and 
service delivery professionals.   


IV.  Technology


Scientific progress and policy development in technology as it 
relates to people with disabilities has virtually exploded in the 
last two decades.  The development of assistive technologies for 
people with disabilities, such as assistive listening devices and 
augmentative communication devices, has grown from innovative 
demonstration to an established industry.  The passage of the 
Telecommunications Act of 1996 (Pub. L. No. 104-104) and the 
Television Decoder Circuitry Act of 1990 (47 U.S.C.  303, 330) 
has added a dimension of universal design to the 
telecommunication industry that has vast ramifications for the 
millions of Americans with hearing disabilities.  The Office of 
Science and Technology Policy in the White House has announced 
initiatives for educational technology for disabled students.  
The development of the Information Superhighway, and the 
increasing utilization of electronic communication, has expanded 
the horizons of technology for people with disabilities even 
further.  With the enactment of the Americans with Disabilities 
Act of 1990 (42 U.S.C. 12101 et seq.), the tenet of 
accessibility by people with disabilities to generic services and 
systems was affirmed in federal policy.  At the urging of the 
disability community, access to the Information Superhighway by 
people with disabilities has become a common technology policy 
principle, appearing in proposals by both the Administration and 
the Congress (U.S. Department of Commerce, 1994).  Insuring the 
application of the principle to specific technological 
developments will be an ongoing task.

The role of the federal government in relation to technology has 
likewise increased.  Originally, the federal government's key 
role was in funding research, development and demonstration of 
the techniques of rehabilitation/bio-engineering.  Interagency 
activities focused on the exchange of information about research 
activities and developments.  In the 1980's, an increasing number 
of partnerships between the public and private sectors resulted 
in the design, development, evaluation, production and 
dissemination of products now referred to as assistive 
technology. 

With the proliferation of microprocessors and the use of  
microcomputers in research and development, the federal role has 
had to expand beyond research and development to address consumer 
needs and business development incentives.  For example, the 
Technology Related Assistance for Individuals with Disabilities 
Act of 1988, as amended (Tech Act), (20 U.S.C.  2201 et seq.), 
currently authorizes funds for systems change and advocacy.  
Grantees under the Tech Act look at such questions as: How can 
assistive technology be made more available to individuals who 
need it? Who pays for the assistive technology devices and 
services?  Who teaches people with disabilities how to use it and 
how to update it?  And how can private developers interact with 
federal laboratories and defense contractors to access 
state-of-the art technological developments?  Grantees then 
advocate for better
technology for all persons with disabilities. 

Likewise, the function of interagency collaboration has expanded.  
Sharing information about individual research projects continues 
to be important.  However, the expanded need involves addressing 
policy issues such as universal design for accessibility and the 
private marketplace.  Federal legislation related to technology 
and the number of federal agencies involved in technology have 
expanded exponentially.  Technology is a rich area of disability 
research with considerable need and opportunity for interagency 
coordination. 


ICDR Member Activities

Much of the applied Federal research directly pointed toward 
assistive technology for people with disabilities is in the 
Department of Education (ED); however.  Several other agencies 
play critical roles in more basic research which has applications 
for people with disabilities.  Many, but not all agency 
activities in technology research are highlighted below.

The National Institute on Disability and Rehabilitation Research 
(NIDRR), ED.  The NIDRR funds 16 Rehabilitation and Engineering 
Research Centers (RERC's) that promote technological solutions to 
problems faced by people with disabilities.  NIDRR also 
administers the Technology Related Assistance for Individuals 
with Disabilities Act of 1988, as amended (Tech Act) which funds 
consumer-responsive state programs to promote access to assistive 
technology for people with disabilities.  The NIDRR funds other 
research and development activities related to technology through 
Small Business and Innovative Research (SBIR) and through Field 
Initiated Research (FIR) projects.

Office of Special Education Programs,(OSEP), ED.  Research is 
funded which promotes the development and adaptation of 
technology in educating students with disabilities and their 
families.  To accomplish this, research priorities are 
established for technology programs, and demonstration/evaluation 
programs are encouraged in other areas of educational interest.  
OSEP also participates in educational assistive technology 
through the Small Business and Innovative Research program.

The Department of Veterans Affairs Rehabilitation and Development 
Services Centers, VA.  These centers operate a Technology 
Transfer Section intended to improve the quality of life for 
veterans with disabilities.  Assistive technology developed in VA 
settings is made available to the general public for technology 
transfer and adaptation to
other populations. 

The National Science Foundation (NSF).  NSF sponsors an advanced 
technology program with potential application to the field of 
assistive technology.  The Engineering Directorate administers 
Industry/University Cooperative Research Centers and supports 
senior student engineers to construct custom-designed assistive 
devices.

National Aeronautics and Space Administration (NASA).  
The NASA's charter includes technology transfer.  The agency is 
specifically authorized to address the needs of people with 
disabilities.  NASA operates six Regional Technology Transfer 
Centers providing U.S. firms and industry access to NASA's 
research and development resources.  NASA also sponsors the 
National Technology Transfer Center at the Wheeling Jesuit 
College in West Virginia helping to turn government research 
results into practical, commercially relevant technology for U.S. 
companies.

Federal Laboratory Consortium for Technology Transfer (FLCTT).  
The FLCTT is comprised of over 600 member research laboratories 
and centers sponsored by 16 federal departments and agencies.  
FLCTT members are dedicated to moving federally-sponsored 
research and development into the mainstream economy.  Some 
laboratories focus on assistive technology and many have other 
technology which might result in improved assistive technology.
 
Center on Information Technology Accommodation (CITA) GSA.  
This is a model demonstration center for advances in accessible 
information environments, services and management practices. This 
clearinghouse also serves as a procedural and policy advisor to 
all Federal agencies seeking to implement regulations on 
accessibility in Federal workplaces.

In addition to these agency sponsored and conducted activities 
related to technology research with potential applicability to 
people with disabilities, many agencies have established internal 
agency-wide committees or programs to promote availability and 
use of technology by people with disabilities within their 
agencies.  These include the following.

The Department of Commerce operates a Committee on Resources for 
Electronic Accessible Technology to End Users (CREATE). 

The Department of Agriculture operates a Technology Accessible
Resources Gives Employment Today (TARGET) Center.

The Department of Defense runs a Computer/Electronic 
Accommodations Program (CAP).

The Internal Revenue Service operates a Computer 
Telecommunications Accessibility Program (CAP). 

A number of interagency committees related to technology for 
people with disabilities are also underway.  These include the 
following.

The Interagency Council on Accessible Technology authorized by 
Section 508 of the Rehabilitation Act is administered by GSA.  
The Council is comprised of senior executives of 30 agencies.  It 
promotes the planning and investment in information 
infrastructure that demonstrates the flexibility of choice needed 
to accommodate people with disabilities (U.S. Department of 
Commerce, 1994).

The Interagency Committee on Developmental Disabilities promotes 
coordination of policies and activities that protect and advance 
the rights of people with disabilities who are served by advocacy 
programs administered by the Federal government.  The Tech Act 
requires grantees to contract with their state Protection and 
Advocacy Agency for legal advocacy for individuals denied access 
to assistive technology.  The ICDD is comprised of 
representatives from federal agencies that administer advocacy 
programs for people with disabilities and is co-chaired by HHS 
and ED.


Interagency Concerns and Recommendations

In 1995, the U.S. Congress Office of Technology Assessment 
updated its landmark 1982 report on technology and people with 
disabilities.  The 1995 report (Galvin & Tewey) articulated a 
continued need for federal coordination.  It noted the following:

An absence of overall coordination at the Federal agency-level,
and an absence of incentives to cooperate at the Federal 
line-level, prevent the optimum application of available 
government resources.... Companies still lack national market 
data based on functional needs.  They lack access to information 
about federally-sponsored research and development, and their 
development efforts are hampered by the threat of personal injury 
liability (Lane, 1995).

These comments underscore the continued need for federal 
coordination and the nature of the need.  Interagency 
collaboration for technology related to people with disabilities 
should not only continue the focus on sharing research activities 
and results, but also include particular scrutiny of the federal 
government's interaction with the private sector as well as 
overall policy development. 


Recommendation #4:

The Executive branch and Congress should support integration of 
universal access and adaptable design in the research and 
development of services and products related to the national 
information infrastructure and telecommunications technology.

The national information infrastructure offers a significant 
opportunity for expanding the inclusion of people with 
disabilities into the mainstream of society.  It also offers the 
risk of further exclusion of people with disabilities if it is 
not designed to be accessible to and usable by them.  At this 
time, it appears that both the Congress and Federal agencies have 
acknowledged the need for universal access by people with 
disabilities.  Continuing to support and promote this standard of 
design and function is critical for future research and 
development. 


Recommendation #5:

The ICDR should develop a Committee to: (1) identify existing 
Federal Activities related to disability technology research; (2) 
propose mechanisms by which these can be coordinated and linked 
to all other Federal funded sources of advanced technology with 
potentially assistive application; and (3) assist agencies in the 
implementation of universal access and adaptable design 
strategies.

ICDR members have identified three areas of technology research 
to be addressed: (1) private-public relationships; (2) policy and 
information sharing among agencies involved in technology 
research, development; and (3) technology transfer and 
innovation.  ICDR members are also aware of the multitude of 
agency and interagency activities underway in the federal 
government related to technology.  This Subcommittee should 
define its mission, develop strategies for assisting member 
agencies in technology collaboration and transfer, and promote 
universal design.

V.   Employment

The persistently low employment rate of people with disabilities 
continues to concern policy makers and researchers.  Depending on 
the definitions used of "work" and of "disability", between 55% 
and 77% of people with disabilities are not working.  According 
to the 1994 Current Population Survey, of the 15.6 million people 
who report having a work disability, 10.2 million, or 65.5%, are 
not in the labor force, while only 19.7% of working-age people 
without disabilities are not participating in the labor force 
(LaPlante, 1995b). African Americans and other ethnic minorities 
with disabilities consistently experience unemployment rates at 
greater levels than their white peers.

The reasons for the low employment rate of people with 
disabilities are many and complex despite many viable Federal and 
private vocational rehabilitation programs in the United States.  
In order to increase employment of persons with disabilities, 
there are many problem areas that need research.  Many people 
with disabilities cite lack of access to health insurance through 
the private sector as a disincentive to employment and an 
incentive to pursue Social Security, which brings with it 
automatic eligibility for public health insurance.  Lack of 
access to personal assistance services is another obstacle.  
Public health insurance is the only vehicle for subsidizing 
personal assistance and without it a disabled individual needs a 
substantial salary to be able to afford to pay for the services.  
Discrimination continues to be an obstacle as evidenced by the 
60,000 employment discrimination complaints received by the Equal 
Employment Opportunity Commission under Title I of the Americans 
with Disabilities Act since 1992.  Lack of motivation (due to 
inadequate rehabilitation) in that period between the end of 
medical treatment and the search for a job is a deterrent to the 
person with a disability.  The transition from school to work is 
fraught with obstacles as disabled students move from a 
traditional and familiar environment into a new and challenging 
world of work.  Lower education levels of older people with 
disabilities are associated with lower employment rates.  
Difficulty finding accessible housing and transportation are also 
obstacles to employment.  Employers lack of knowledge on how to 
accommodate disabled workers is also a deterrent to wide scale 
employment equity.


ICDR Member Activities

Several federal agencies support research related to the 
employment of people with disabilities.  Federal agencies 
conducting research services and evaluation programs related to 
the employment of people with disabilities include the following:

The Rehabilitation Services Administration (RSA) ED.  The State 
and Federal Vocational Rehabilitation (VR) program is a major 
resource for
assisting individuals with disability to enter employment.  The 
research thrust of RSA is primarily in extensive program 
evaluation.  For example, the activities of RSA's agencies are 
recorded and correlated with the successes and failures of the 
program each year.  In FY 1995, State VR agencies had a total 
caseload of 1,250,314 of whom 940,177 (75.2 percent) were 
individuals with severe disabilities.  A total of 209,509 
individuals were rehabilitated in FY 1995 and an additional 
795,491 cases were in various phases of the program at the end of 
the period.  In addition to program evaluation, RSA conducts and 
evaluates demonstrations and supports a center for hearing 
research.  

The National Institute on Disability and Rehabilitation Research 
ED.  NIDRR supports research and training centers that target 
effective employment strategies for specific groups of people 
with disabilities.  NIDRR supports other employment related 
research under a range of research authorities.

The Social Security Administration SSA.  SSA is conducting 
research on employment under an interagency agreement with NIDRR.  
In addition, the agency sponsors a range of research projects 
related to employment and gathers and disseminates data on SSI 
and SSDI recipients.  

Office of the Assistant Secretary for Planning and Evaluation 
(ASPE) HHS.  ASPE conducts research related to barriers to 
employment for people with disabilities and the relationship of 
health policy and employment policy.

Community Mental Health Services, NIMH, HHS.  This agency funds 
research on employment for individuals with long term mental 
illness.

In the Department of Labor, the Bureau of Labor Statistics 
analyzes data related to employment, although data about people 
with disabilities are not gathered to the extent that it is for 
other minority groups.  In the Employment and Training 
Administration, there is a sizable Research and Development 
program that can be used for disability employment research.  The 
Department also gathers data about youth with disabilities that 
participate in the Job Training Partnership Act (JTPA) programs.

While not directly conducting research, several other federal 
agencies have missions related to the employment of people with 
disabilities including the Equal Employment Opportunity 
Commission (EEOC), which enforces the employment provisions of 
the Americans with Disabilities Act; the President's Committee on 
Employment of People with Disabilities (PCEPD), which promotes 
the employment
of people with disabilities; and the National Council on 
Disability (NCD), which advises the President and Congress on 
matters of concern to people with disabilities.

In 1994, the White House organized a National Disability Policy 
Review Panel under the auspices of the Domestic Policy Council 
and the Office of Management and Budget.  The effort included a 
section on employment and the panel will present recommendations 
to the White House in 1996.

In 1995, the Social Security Administration and the National 
Institute on Disability and Rehabilitation Research entered into 
an interagency agreement to coordinate and, where necessary,  
create the knowledge-based resources critical to the Social 
Security Administration's ability to promote return-to-work for 
its beneficiaries.  The agreement will generate white papers, 
symposia, and forums on issues related to employment of SSI/DI 
beneficiaries.  It will facilitate an exchange of research 
findings and public policy proposals among experts, researchers, 
federal officials, and SSA's customers.

Also in 1995, the Rehabilitation Services Administration, of the 
Office of Special Education and Rehabilitative Services/ED 
(OSERS), initiated work on a National Training Conference on 
Exemplary Employment Strategies for Individuals with 
Disabilities.  The Conference was held on July 17-19, 1996 in 
Washington, DC.  Over 300 individuals participated in this major 
national event, representing State vocational rehabilitation 
agencies, Federal agencies, business and industry, labor, 
community-based rehabilitation service providers and 
universities.  Research findings on employment of people with 
disabilities and effective employment strategies identified 
through a national nomination process were presented at the 
conference.


Interagency Concerns and Recommendations

Members of the ICDR believe that their agencies could benefit by 
further collaboration and sharing of research-based information, 
particularly those agencies that conduct research and those that 
provide services or otherwise facilitate employment.  
Dissemination of employment related research results among 
relevant federal agencies would assist all agencies in more 
effectively carrying out their missions.  

Many agencies that do not have a research mission either generate 
data that could be used by researchers or themselves use the 
results of Federally-supported research in employment.  For 
example, the PCEPD has run the Job Accommodation Network (JAN) 
for several years, providing technical assistance to employers 
seeking to accommodate employees with disabilities.  JAN has a 
wealth of data related to employers, accommodations and cost 
which have not been thoroughly analyzed. 
Other federal agencies that conduct research may be interested in 
working with JAN to develop research projects.  Access to the 
latest research can assist program or service agencies to carry 
out their respective missions.  In turn, service agencies can 
suggest areas where additional research could provide needed 
information.   


Recommendation #6:

The ICDR should develop a Task Force on Employment for Persons 
with Disabilities and charge it to: (1) collect and disseminate 
information about current Federal agency research efforts in this 
area; (2) develop a white paper demonstrating needs and recommend 
mechanisms for collecting and disseminating current data; and (3) 
recommend whether an ICDR Employment Subcommittee should be 
established.

A Task Force on employment would enable relevant ICDR members to 
meet to share results of current research efforts.  Basic to the 
deliberations of this Task Force would be an action to compile 
information about all current employment research projects funded 
by Federal agencies.  An interagency mechanism to routinely share 
research plans and findings related to employment would then be 
devised.  Based on the mechanisms involved and the need for 
continued long-term deliberations, the Task Force would make 
recommendation on a continuing Employment Subcommittee, if 
needed.  Members of the Task Force should include the President's 
Committee on Employment of People with Disabilities, the National 
Council on Disability, the Equal Employment Opportunity 
Commission, the Employment and Training Division of the 
Department of Labor, the Department of Health and Human Services, 
the Office of Disability of the Social Security Administration, 
the Office of Special Education and Rehabilitative Services of 
the Department of Education and the Civil Rights Division of the 
Department of Justice.   

Currently the Bureau of Labor Statistics in the Department of 
Labor and the Census Bureau in the Department of Commerce 
regularly collect, analyze and disseminate employment data 
aggregated on the basis of gender, race, ethnicity, age and 
geography.  No such data are collected or reported routinely 
about people with disabilities.  The white paper produced by the 
employment task force will identify appropriate mechanisms for 
regularly collecting and disseminating employment data for people 
with disabilities in the same manner used for members of other 
federally recognized groups subject to discrimination.


VI.  Data for Policy Development and Accountability

In recent years the demand for disability data has grown louder 
and more persistent.  With the enactment of the Americans with 
Disabilities Act in 1990 and the articulation of goals for the 
Nation for people with disabilities (equality of opportunity, 
full participation, independent living, and economic 
self-sufficiency), policy makers, the research community and the 
disability community have sought the development of indicators 
and measures that will enable monitoring of the nation's progress 
in meeting those goals. Recent efforts to reform social policy in 
areas such as health care and welfare have also highlighted the 
need for data about people with disabilities.  Data are needed to 
assess the impact of policy proposals on people with 
disabilities, the health care and social welfare needs of people 
with disabilities, the extent to which those needs are being met, 
how those needs could be met, and the cost of meeting those 
needs. 


Interagency Concerns

The federal government produces or supports numerous databases 
that include information about disability.  The key 
population-based surveys for working age people with disabilities 
are the Current Population Survey, the National Health Interview 
Survey and the Survey of Income and Program Participation.  A 
recent report counted 39 national databases including household 
and/or person based surveys, provider based data and 
administrative data (U.S. Department of Health and Human 
Services, 1995a).  Despite the number of databases, problems 
obtaining adequate data persist, including:

1)  While much is known about the frail elderly, little is known 
    about other subgroups of people with disabilities, such as 
    children, working age adults and special populations (e.g. 
    mentally ill, developmentally disabled) (U.S. Department of 
    Health and Human Services, 1995a).

2)  Typical measures of disability, such as Activities of Daily 
    Living are not effective in measuring people with cognitive 
    impairments or mental illness or for children (U.S. 
    Department of Health and Human Services, 1995a).

3)  National data systems, e.g., Special Education, Medicaid, are 
    largely decentralized with gaps persisting (U.S. Department 
    of Health and Human Services, 1995b).

4)  Disability data continue to be embedded in a health/medical
    paradigm, rather than an independent living paradigm as 
    embodied in the Americans with Disabilities Act. (Kirchner, 
    1995). 

5)  There are no ongoing measures of the quality of life of 
    people with disabilities over time (e.g. longitudinal data 
    bases including panel studies) which leaves large gaps in our 
    knowledge (U.S. Department of Health and Human Services, 
    1995a; LaPlante, 1995a).

6)  Multiple definitions of disability pose challenges for 
    comparing data sets, both nationally and internationally, and 
    making policy inferences (Domzal, 1995; LaPlante 1995a).

7)  Data on subgroups of people with disabilities, such as Native 
    Americans and Alaskan Natives, are often unavailable.

There are many unique benefits of national data collection 
efforts in relation to people with disabilities.  The most 
notable is the ability to provide direct national estimates at 
the community level of people with disabilities.  The long form 
of the decennial census administered by the Census Bureau allows 
for such estimates.  With local communities, regions and states 
accepting increasing responsibility for service provision, the 
importance of these data cannot be underestimated. 


Recommendation #7

The Bureau of the Census should retain the use of the long form 
of the Decennial Census, i.e., the form which contains 
information on persons with disabilities, in order to collect 
data about the prevalence and demographics of disability in the 
United States.

There has been some discussion in recent months about eliminating 
the long form as a cost saving measure.  Elimination of this form 
would eliminate state-specific and community-specific demographic 
information about people with disabilities, thus hampering the 
ability of states and localities to plan effectively.  Issues of 
ongoing concern to people with disabilities, such as health 
insurance, long term supports, and employment, require ongoing 
databases to assess status, determine need and measure progress.


ICDR Member Activities and Recommendations

The ICDR is parent to the Disability Statistics Subcommittee 
which currently has participants from over twenty different 
Federal agencies.  Over the years, the
Subcommittee has evolved into an important forum for federal 
agencies and, more recently, researchers outside of government, 
to share information about disability related statistics and 
issues.  Chairs of the Subcommittee, Dr. Paul Placek of the 
National Center for Health Statistics and Dr. Sean Sweeney of the 
National Institute on Disability and Rehabilitation Research, 
conduct monthly meetings in Washington that utilize Envision 
satellite sites enabling participants in Hyattsville, MD, 
Baltimore, MD, and Atlanta, GA to participate.  Chairs of the 
Subcommittee conduct routine mailings via E-mail and postal mail 
sharing recent reports and papers of relevance to disability 
statistics, upcoming meetings and conferences and future agendas 
for Subcommittee meetings.

Often the Disability Statistics Subcommittee serves as a sounding 
board for its members who are examining complex data sets, 
planning conferences or developing surveys.  It provides an 
opportunity for researchers from various agencies to share agency 
activities, promote collaboration and use each other as 
intellectual resources.  The Subcommittee was an active forum for 
discussion and development of the 1994-95 Disability Survey 
discussed below.  In the last year, topics addressed by the 
Subcommittee have included North American and world proposals for 
the revision of the International Classification of Impairments, 
Disabilities and Handicaps (ICIDH), statistics from the EEOC 
under the employment provisions of the ADA, scientific meetings 
of the American Public Health Association and the Society for 
Disability Studies, the Social Security Administration's plan for 
redesigning the disability claims process; and disability data 
from the 1993 Behavioral Risk Factor Surveillance Survey. 

The success of the Disability Statistics Subcommittee is 
evidenced by its persistent growth in participation over the 
years and the ever increasing activity of the Subcommittee.  It 
serves as a model for interagency collaboration and coordination 
and should be considered a resource for other agencies seeking to 
establish effective data collection mechanisms.  The ICDR staff 
will work with member agencies to ensure a permanent meeting 
site, adequate logistical support, and appropriate communication 
vehicles to further enhance this technical assistance role.


The 1994/95 Disability Survey

The 1994/95 Disability Survey is a supplement to the National 
Health Interview Survey (NHIS), an annual survey of the 
non-institutionalized civilian population of the United States.  
Personal interviews are used to collect data on socio-demographic 
and health related variables from approximately 48,000 households 
comprised of 122,000 individuals.  Trained census interviewers 
collect data continuously every year.

Supplements to the core NHIS questionnaire are added annually to 
address pressing issues.  The 1994-95 Disability Supplement is 
the first exhaustive disability survey undertaken since 1978 and 
the first ever to collect national population-based data on 
children with disabilities and people with developmental 
disabilities (U.S. Department of Health and Human Services, 
1995a).  It is currently planned as a one time only effort.

The Disability Survey was the product of collaboration between 
multiple federal agencies experiencing a need for data that were 
not currently available.  Originally four separate surveys were 
planned to gather information about various aspects of 
disability.  The agencies involved (the Office of the Assistant 
Secretary for Planning and Evaluation of HHS, the Office of 
Supplemental Security Income at the Social Security 
Administration, the Office of Disability at the Social Security 
Administration, and the Bureau of Maternal and Child Health at 
the Health Resources and Services Administration of HHS) 
determined that a collaborative effort would enable them to avoid 
the duplicative interviewing activities and allow them to develop 
a more comprehensive survey which would generate a more extensive 
data set.

As plans for the development of one comprehensive survey evolved, 
other agencies and organizations joined the effort, including the 
Office of the Assistant Secretary for Health of HHS, 
Administration on Developmental Disabilities of HHS, 
Administration on Aging of HHS, Disability Prevention Program of 
the Centers for Disease Control and Prevention, the National 
Center for Medical Rehabilitation Research, the Center for Mental 
Health Services, the Maternal and Child Health Bureau, the 
Rehabilitation Services Administration, and the NIDRR of ED, the 
Office of Research and Demonstrations of the Health Care 
Financing Administration, the Office of Research and Statistics 
of the Social Security Administration, the Bureau of 
Transportation Statistics of the Department of Transportation and 
the Robert Wood Johnson Foundation.  

A questionnaire was developed for a national survey of people 
with disabilities, and extensively reviewed by federal agencies 
involved with disability, advocacy groups and academics.  It was 
voluntarily tested by people with disabilities and their families 
and pre-tested on 250 households in the Washington, DC area.  
Data collection is scheduled to be completed by the fall of 1996.  
Information from the Disability Survey can be linked to 
administrative disability records at SSA and Medicare records at 
HCFA.

The Survey was designed to gather basic demographic information 
about people with disabilities and to address key policy 
questions, such as:

u   Why is employment among people with disabilities so low and 
    why
    do some people with the same disabilities work while others 
    do not? (HHS, 1995a)

u   What needs do people with disabilities experience in relation 
    to job accommodations, social service assistance and personal 
    assistance? (Verbrugge, 1994)

u   Which occupation groups are most in need of worksite 
    accommodations? (Verbrugge, 1994) 

u   What barriers discourage people from hunting for jobs, and 
    what policies would relieve those barriers? (Verbrugge, 1994)

u   How do people with mental retardation and other developmental 
    disabilities access community services and what is the role 
    of Medicaid? (HHS, 1995a)

u   What is the impact of racial/ethnic differences in 
    disability? (HHS, 1995a)

u   Why are growth in SSI and SSDI enrollment and costs so high? 
    (HHS, 1995a) 

This landmark survey will undoubtedly yield a rich new data set 
for researchers.  However, the extent to which it will be 
analyzed for answers to important policy questions is 
undetermined.  Funds must be found to carry out needed analyses 
from this important data set.


Recommendation #8

Federal agencies should collaborate to determine how best to 
establish a regularly administered (e.g. annual) disability 
survey, over time, in order to assess significant changes in the 
status of persons with disability.
 
The 1994-95 Disability Survey is currently a one time only 
supplement to the NHIS.  Reconducting the survey, or a comparable 
one with revisions, at a later date, would provide policy makers 
with critical information about the change in status of people 
with disabilities over time in areas such as employment and 
health insurance.  With so few repeated measures over time of 
people with disabilities, it is currently difficult to assess 
progress over time.  


Center on Disability Statistics

Funded by the National Institute on Disability and Rehabilitation 
Research, the Rehabilitation Research and Training Center on 
Disability Statistics produces and disseminates statistical 
information on disability and the status of people with 
disabilities in the United States.  It establishes and monitors 
indicators of how conditions are changing over time to meet 
health, housing, economic and social needs of people with 
disabilities.  The Center conducts secondary analysis of national 
surveys and other databases and publishes statistical abstracts 
and reports.  It operates a statistical data information service 
and conducts statistics and policy forums.

The center has published reports on timely policy issues 
including medical expenditures for people with disabilities, 
disability among racial and ethnic groups, disability and 
employment, disability and health insurance coverage and state 
estimates of disability.  The Center is currently working on 
estimates of indirect costs of disability and determinants of 
medical expenditures.  A policy forum on housing is planned.


Research Archive on Disability in the United States (RADIUS)

Funded by the National Center for Medical Rehabilitation Research 
at the National Institute for Child Health and Human Development, 
this project facilitates basic and applied research on issues 
related to disability by archiving data sets and their 
measurement instruments.  RADIUS archives raw data and 
statistical program command files and documentation from a number 
of data sets related to disability.  It provides printed and 
machine readable measurement instruments that correspond to the 
archived data sets as well as computerized search, retrieval and 
extract software to retrieve portions of data sets and 
measurement instruments that are relevant to a particular issue.

As of October 1995, the project had archived, or was in the 
process of archiving 21 data sets.  A key dissemination strategy 
of the project is to make RADIUS available on Internet in 1996 so 
that social scientists will be able to search data sets, select 
data for their research projects and download data files and 
documentation.

A project such as RADIUS maximizes the availability of data sets 
for analysis and research for researchers in a range of 
disciplines and a range of geographic locations.  Such a project 
promotes maximal use of data gathered from a range of sources 
over a vast period of time, so that new research questions may be 
developed and answered.  Coordination of efforts with the 
Disability Statistics Center may further enhance dissemination 
and utilization of data bases. 


Department of Health and Human Services Data Council

During the Reinventing Government II process, the Department of 
Health and Human Services (HHS) identified the "Consolidation of 
Surveys and the Development of Data Standards" as a goal.  The 
Consolidation plan, which is currently underway, calls for a 
redesign of the NHIS so that it serves as the sampling nucleus 
for many HHS population surveys.  With representation from all 
key HHS agencies, a Data Council will be staffed by the office of 
the Assistant Secretary for Planning and Evaluation.


Recommendation #9

The ICDR should establish an official liaison to the Department 
of Health and Human Services' Data Council to ensure exchange of 
information and provide an interagency disability research 
perspective on survey consolidation.

Expanded coordination and integration of surveys will have 
significant implications for disability data from the viewpoint 
of numerous federal agencies.  If the Data Council is effective 
in reaching its goals, there may be implications for other data 
collection agencies, such as the Census Bureau and the Bureau of 
Labor Statistics.  Expanding the Data Council beyond the 
boundaries of HHS into other federal agencies could be an option 
to explore in the future.    


Disability Definitions

A recent study identified statutory definitions of disability in 
50 federal acts and programs (Domzal, 1995).  Among these 50 acts 
and programs, there is some overlap among definitions.  Some 
statutes refer to definitions contained in other sections of the 
same Act, and some refer to the definitions contained in the 
other statutes such as the Americans with Disabilities Act or the 
Rehabilitation Act of 1973, as amended.  While every definition 
has its particular rationale and function (e.g. eligibility 
determination for a program or benefit), the large numbers of 
definitions makes interagency data difficult to compare.  In 
addition, most definitions continue to reflect a health-oriented 
medical model of disability, focusing on the individual's 
impairments and deficits at the level of individual functioning. 

The independent living paradigm that is reflected in the 
Americans with Disabilities Act has not yet influenced  
definitions of disability commonly used to collect data in large 
population based surveys, such as the Current Population Survey 
and the
National Health Interview Survey.  Disability researchers are 
beginning to challenge current definitions and articulate the 
need for new definitions.  In public comments provided to the 
ICDR, one researcher noted that disability data needs to "reflect 
a framework that distinguishes among impairments, disabilities 
and socio-environmental barriers" (Kirchner, 1995).  Because 
individual functioning is to a large extent mediated by the 
environment, new measures of disability need to include measures 
of environmental barriers and adaptive features that prohibit or 
facilitate the inclusion and productivity of people with 
disabilities.  

A second issue of concern in the area of disability definition is 
the extent to which data from the United States can be compared 
to data from other countries.  The disability classification 
scheme developed by the World Health Organization, the 
International Classification of Impairments, Disabilities and 
Handicaps (ICIDH) is the international language widely used by 
statisticians and researchers.  It is currently undergoing 
revision, with the year 2000 set as the date for a new version of 
the ICIDH.  Researchers and members of the disability community 
from the United States are actively participating in the revision 
process under the leadership of the National Center on Health 
Statistics.  The benefit of international usage of the ICIDH is 
that it provides a standardized means of international 
comparability of data.  Without a common definition, surveys from 
different countries cannot be compared.  Thus, a wealth of 
information is foregone.


Recommendation #10

Federal agencies should continue to seek common definitions of 
disability and should participate actively in the World Health 
Organization's International Classification of Impairments, 
Disabilities and Handicaps (ICIDH) revision process seeking 
global consensus on these definitions.
 
The advantages of utilizing a standard definition for disability 
data are enormous.  International comparisons will be possible as 
well as comparisons over time in order to determine how the 
status of people with disabilities (e.g. employment rate) 
changes.  The continued participation of the United States in the 
revision should ensure input from people with disabilities and 
researchers so that the outcome will be acceptable to all 
stakeholders.


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