Reorienting Disability Research
April 1, 1998
National Council on Disability
1331 F Street, NW, Suite 1050
Washington, DC 20004-1107
(202) 272-2004 Voice
(202) 272-2074 TTY
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http://www.ncd.gov
This document is free of charge and available in alternative
formats.
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
April 1, 1998
The President
The White House
Washington, DC 20500
Dear Mr. President:
On behalf of the National Council on Disability (NCD),
I am pleased to submit a report entitled Reorienting Disability
Research. The report synthesizes recommendations by researchers
and consumers toward a disability statistics policy that is more
meaningful and useful in light of the paradigm shift precipitated
by the Americans with Disabilities Act of 1990, which NCD originally
proposed.
For many years, disability research has appeared to
be essentially a scientific exercise, based on academic procedures
applied in an area of health care. People with disabilities have
learned, however, that underlying values and assumptions have guided
research in ways that are not necessarily important or helpful to
them as the ultimate beneficiaries. Choices are made, either consciously
or not, at each stage of research design, collection, and dissemination
that affect the utility of the research to individuals with disabilities.
Given limited federal resources, which questions should be studied?
How should they be studied? What should be done with the results?
This report recommends action steps to reorient the
answers to these questions based on the thinking that disability
is a natural part of the human experience; that people with disabilities
should participate in the production and consumption of research
about them; and that disability data should be an integral part
of population statistics and socioeconomic measures of progress.
NCD stands ready to work with you and stakeholders outside the government
to see that the agenda set out in the attached report is implemented.
Sincerely,
Marca Bristo
Chairperson
(The same letter of transmittal was sent to the President
Pro Tempore of the U.S. Senate and the Speaker of the U.S. House
of Representatives.)
NCD MEMBERS AND STAFF
Members
Marca Bristo, Chairperson
Kate P. Wolters, Vice Chairperson
Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel Pollo
Debra Robinson
Shirley W. Ryan
Michael B. Unhjem
Rae E. Unzicker
Hughey Walker
Ela Yazzie-King
Staff
Ethel D. Briggs, Executive Director
Andrew J. Imparato, General Counsel and Director of Policy
Mark S. Quigley, Public Affairs Specialist
Jamal Mazrui, Program Specialist
Janice Mack, Administrative Officer
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
ACKNOWLEDGMENT
The National Council on Disability wishes to express
its appreciation to Jane West for her assistance in drafting this
report.
BACKGROUND
This document is the product of a yearlong initiative
sponsored by the National Council on Disability (NCD) and the National
Institute on Disability and Rehabilitation Research (NIDRR) of the
U.S. Department of Education. It was prompted by the National Council
on Disability's Disability Policy Summit in April 1996 and subsequent
release of the report Achieving Independence: The Challenge for
the 21st Century in July 1996. At the Policy Summit,
people with disabilities articulated their keen interest in disability
statistics and identified a need for changes in federal data collection
activities. Their interest in disability statistics reflects their
recognition that such data are often used in policy decisions and
that better data will enhance their ability to pursue changes in
government policies that will benefit people with disabilities.
Recommendations to improve data collection are included in Achieving
Independence.
NCD was prompted by the disability community to go
beyond the Achieving Independence recommendations and initiate
in-depth dialogue with policy makers, people with disabilities,
and researchers about how such changes could be achieved. It was
determined that the next step would be a document targeted to federal
disability policy makers in Congress and the Administration, outlining
specific action steps that could be taken to improve the nation's
disability data collection activities. NIDRR initiated the development
of this document by funding a synthesis of disability data recommendations
that had been made by various bodies in the recent past. This synthesis
was reviewed by members of the Interagency Subcommittee on Disability
Statistics and used as the basis for a meeting held on June 13,
1997, in Washington, D.C. More than 45 researchers, people with
disabilities, and policy makers attended that meeting, entitled
"How Consumers Can Maximize Their Influence on and Use of Disability
Data: A Dialogue Among Consumers, Data Producers and Data Analysts."
A significant portion of the meeting was focused on discussing the
synthesis and offering suggestions for improvement. This report
is the product of that meeting.
It is intended to inform policy makers in Congress
and the Administration about action steps they could take to improve
disability data collection activities of the Federal Government.
While the report does not purport to represent consensus among the
disability community, researchers, and policy makers, it does offer
a synthesis of recent thinking on this topic.
TABLE OF CONTENTS
Introduction
Orienting Disability Data Collection
Activities to the New Paradigm of Thinking About Disability
Improving Organizational Structure
Refining Current Data Collection Efforts
Using Existing Data
Developing New Data Collection Instruments
Broadening Dissemination
Appendix I: Major Surveys
Appendix II: Mission of the National
Council on Disability
References
INTRODUCTION
Data related to people with disabilities have increasingly
gained the interest of policy makers, the disability community,
and researchers over the past decade. Calls for greater policy and
program accountability and effective planning, both within and outside
of government, have fueled an interest in disability-related data.
Policy issues on the forefront of the disability agenda, such as
long-term services and employment, require relevant measures, accurate
data, routinely repeated measures, sophisticated analysis, and both
broad and well-targeted dissemination.
Changes in federal data collection activities are
likely to be long-term efforts with significant political and resource
considerations. Cost implications of developing new questions or
expanding sample sizes are not to be ignored. The politics of negotiating
new or replacement questions must be a consideration in carrying
out any recommendations.
During the past several years, numerous conferences
and workshops have been held to discuss the status of disability-data-related
activities of the Federal Government, including data collection
and statistical reporting of disability. The purpose of this report
is to synthesize the recommendations of those groups and present
action steps for implementing changes in federal data collection
activities.
The following action steps address six areas of primary
importance in disability statistics: orienting disability data collection
activities to the new paradigm of thinking about disability, improving
organizational structure, refining current data collection efforts,
using existing data, developing new data collection instruments,
and broadening dissemination.
ORIENTING DISABILITY DATA COLLECTION
ACTIVITIES TO THE NEW PARADIGM OF THINKING ABOUT DISABILITY
With the enactment of the Americans with Disabilities
Act (ADA) in 1990, a new paradigm of thinking about disability was
firmly established in law and policy. Moving away from the medical
model that usually forms the foundation of disability policy, this
new paradigm offers a civil rights orientation that focuses on societal
barriers to full participation rather than the functional impairments
of the individual. The disability community has embraced ADA as
its declaration of independence, one that articulates a vision of
an accessible and equitable society. However, the vast majority
of data collection activities of the Federal Government retain the
medical bias and have not yet adopted the new paradigm. Examples
of medical bias are found in questions about work in population-based
surveys such as the Decennial Census and the Current Population
Survey (CPS). Questions in those surveys focus on the individual's
impairment and functional level but fail to identify barriers in
society and the environment--such as discrimination and lack of
accommodations in the workplace--that are potential obstacles to
employment, assuming instead that the obstacles to employment reside
solely with the individual as a result of the impairment itself.
Ideally, disability measures should also tell us about
participation with and without accommodations. ADA recognizes the
need for and emphasizes the use of accommodations to enable people
with disabilities. Measuring the use of accommodations will not
only indicate the gross level of need; it is also the best indicator
of how well we are meeting ADA goals.
With the enactment of ADA, people with disabilities
established themselves as a minority group with civil rights protections
comparable to those available to other protected groups, such as
ethnic and racial minorities, women, and the elderly. As a minority
group, people with disabilities increasingly seek to have data about
themselves that are comparable to data collected about other protected
groups. For example, through the CPS, the Bureau of Labor Statistics
collects and disseminates data each month about the employment rate
of other protected groups; such data are collected and disseminated
only yearly about people with disabilities.
The following action steps are recommended to infuse
the disability paradigm embodied in ADA into federal data collection
activities.
1. Use ADA as the basis for the definition of disability
in federal surveys.
ADA requires viewing disability as dynamic rather
than static, as an interaction between an individual with an impairment
and the environment rather than as a deficit of an individual. Definitions
of disability need to be changed to reflect this orientation. In
addition, questions about disability issues should be integrated
into questions being asked of all respondents. For example, disability-related
support needs could be included in a list of support needs in a
question asked of all respondents, not just those who have identified
themselves as having an impairment.
2. Operationalize the nation's goals for people with
disabilities, as articulated in ADA, so that data can be collected
about the extent to which society is moving toward reaching those
goals.
ADA states that the nation's proper goals for people
with disabilities are (1) equality of opportunity, (2) full participation,
(3) independent living, and (4) economic self-sufficiency. Statistical
measures should be developed for each of these goals. Data should
be regularly collected to determine whether the nation is moving
toward these goals. The government should dedicate resources to
this effort.
3. Breakdowns by disability should be included in all
federal data collections that collect data on gender and race/ethnicity.
Where data are collected, analyzed, and reported about
other protected groups, this should also be collected, analyzed,
and reported about people with disabilities. Such data activities
are a matter of both equity and good research. We recognize that
there are unique issues involved in obtaining adequate samples of
people with disabilities, but they should be resolvable with creative
sampling techniques, larger samples, or both.
4. Methodological research on the survey definition
of disability and its subtypes, on sampling issues, and on participation
criteria should be ongoing.
Disability data collection is an evolving field. A
formidable amount of work remains to improve the validity and accuracy
of disability statistics. The constant methodological research being
done in fields such as economics, physics, and medicine has proven
invaluable for improving research results in those fields. Equal
attention should be given to disability-related research to ensure
that upcoming substantive research will be conducted appropriately.
5. Ensure that people with disabilities are integrally
included in planning, developing, and carrying out disability-related
data collection activities at all levels, from local to international.
People with disabilities should be a part of designing
and refining data collection instruments, determining questions
that will guide analysis, and developing dissemination strategies.
Too often, data are generated that are irrelevant or unusable by
people with disabilities. People with disabilities are often unaware
of what is available. Inaccessible formats prevent meaningful use.
People with disabilities should be provided financial support for
their participation in the provision of data (e.g., responding to
surveys and requests for information), the development of data activities,
and the utilization of data. Information should be available in
accessible formats in all phases of data collection activities.
IMPROVING ORGANIZATIONAL STRUCTURE
Numerous federal agencies and interagency entities
are involved in disability data collection activities. Furthermore,
most federal surveys operate with particular constituencies, both
inside and outside of government, and in political environments.
Coordination and collaboration are challenging but essential for
effective data collection activities.
The following action steps are recommended to improve
organizational structure.
6. Create a central coordination mechanism, such as
a task force or committee, to effectively manage disability data
efforts.
Because of the complexity of this task, the range
of interest involved, and the need to make sound recommendations,
this must be a high-ranking task force or committee that includes
representation from the federal and state governments, the disability
communities, research communities, and providers of services. Its
charge should be to develop a plan within a delimited time span
of about one year. This entity should work in conjunction with the
Interagency Subcommittee on Disability Statistics.
7. Develop a mechanism for all federal agencies to
exchange information regularly with the Department of Health and
Human Services (HHS) Data Council, which reviews and clears all
HHS surveys. The Interagency Subcommittee on Disability Statistics
should be integrally involved in this effort.
REFINING
CURRENT DATA COLLECTION EFFORTS
The Federal Government routinely carries out several
large surveys. Appendix I includes a partial list of those surveys
and a brief description of their purposes. Numerous conferences
and reports have outlined recommendations for improving the disability
questions in those surveys. A compilation of those recommendations
follows each survey description in the appendix.
The following actions steps are recommended to refine
current data collection efforts.
8. Revise census questions for the Year 2000 Census
to reflect the ADA definition. Include such questions in the short
form.
Numerous federal agencies have been working to revise
the 1990 census questions on disability for use in the Year 2000
Census. Efforts should proceed until questions are developed that
reflect the new paradigm of thinking about disability embodied in
ADA. Questions about disability should be included on the short
form only if sufficient space can be given or questions developed
that will accurately capture the full disability community in the
space available.
9. Continue active participation, including people
with disabilities, in the revision of the International Classification
of Impairments, Disabilities, and Handicaps (ICIDH), to promote
an international standard and uniform coding schemes that include
a measure of the disabled individual's participation in society
and the accessibility of the environment.
Utilization of an internationally accepted classification
system promotes meaningful international data exchange and analysis.
During the past few years, the U.S. government has been actively
involved in the ICIDH revision process, which includes the development
of measures of societal participation and access. The ICIDH was
revised in April 1997 into the ICIDH-2 beta version. The beta version
is scheduled for review and approval by the World Health Organization's
World Health Assembly in April 1999.
10. Expand the monthly Current Population Survey questionnaire
to include questions on the employment of people with disabilities.
Currently the Bureau of Labor Statistics collects
data about the employment of people with disabilities only once
a year, in the March supplement. Data about the employment of other
protected groups are collected and reported on a monthly basis.
Including people with disabilities in this monthly collection and
analysis would bring public attention to the problem of the high
level of unemployment among people with disabilities. Questions
used in the Current Population Survey should be reviewed to ensure
that they are consistent with the new paradigm of disability and
that they will accurately capture work information for people with
disabilities.
11. Develop and refine a constellation of disability
indicators that will comprise Goals 2010 for the forthcoming Healthy
People 2010 effort.
12. Integrate data on people with disabilities into
all existing or proposed data collection efforts being carried out
through major government initiatives.
This action would include information-gathering efforts
related to such programs as the school-to-work transition program,
health care, and welfare reform to enable determination of the impact
of these programs on people with disabilities. Surveys about topics
such as crime and tourism should include questions about people
with disabilities. A goal is to have at least one "global disability
indicator" on every federal, state, and small-area survey funded
by the Federal Government.
13. Ensure that the broadest range of people with disabilities
(including children, those with hidden disabilities, and minorities
with disabilities) are sampled.
To understand the unique aspects of all people with
disabilities, it is critical that all groups be adequately sampled.
Frequently, too few people with a particular disability or of a
particular age or ethnicity are sampled to allow for statistically
sound analysis.
USING EXISTING DATA
The following action steps are recommended to make
better use of existing data.
14. Ensure extensive analysis of data from the disability
supplement to the National Health Interview Survey.
15. Require coordination and linking of data with and
across federal and state systems as a way of ensuring quality, accuracy,
efficiency, and confidentiality of data.
There is currently a large amount of duplication among
data collection efforts, as well as significant gaps in data collection.
Improved coordination of efforts could eliminate duplication and
identify gaps. Linkage of data sets would facilitate effective research
into complex questions.
16. Evaluate data elements of state systems for data
elements common to both federal and state data banks and identify
minor modifications that could establish additional common data
elements, including key demographic, disability, service and cost
variables.
Many informational needs (such as characteristics
of low-prevalence populations and outcome efforts) cannot be addressed
via federal data efforts. Significant data on needs, programs, outcomes,
and efficacy are found at state and local levels more often than
at the federal level. The Federal Government should take the initiative
to identify, synthesize, and make available the significant amount
of data that exist at state and local levels. The government should
examine new disability data collections funded by National Centers
for Environmental Health to be used soon in 16 states on their Behavioral
Risk Factors Surveillance System survey. It should ask state health
departments for their experience in making state estimates and evaluate
the State and Local Area Integrated Telephone Survey, the new National
Center for Health Statistics (NCHS) National Health Interview Survey
(NHIS) designed to greatly enhance state estimates. It should review
recently published techniques for making small-area estimates (such
as Indirect Estimators in U.S. Federal Programs, edited by
W. L. Schiable and published by Springer-Verlag), and it should
note the level of individual unit analysis currently permitted on
NCHS public use tapes.
17. Backcode additional surveys to the ICIDH or ICIDH-2
beta version or both, to produce roughly comparable disability data
now from data collected previously with no goal of being comparable
to any national or international standard.
Apply algorithms used in the successful backcoding
efforts of the Department of Education, the United Nations Statistical
Division's DISTAT project, and the National Center for Medical Rehabilitation
Research's Research Archive on Disability in the United States.
DEVELOPING NEW DATA COLLECTION INSTRUMENTS
The following action steps are recommended to develop
new data collection instruments.
18. Establish focus groups on the emerging issues and
needs of persons with disabilities in the topical areas of major
surveys before data collection instruments are planned.
It is not enough to have people review completed surveys;
key constituencies must also be involved in defining the purpose
and research questions of a study. Guidelines in NIDRR's Participatory
Action Research (PAR) Report should be followed.
19. Develop a framework for the collection of employment
data on persons with disabilities that allows (1) description of
the employment patterns of persons with disabilities and (2) assessment
of individual characteristics and work environments that account
for these patterns.
These data should allow for an analysis of how disability
affects the ability to work. Data should be collected on functional
limitations, duration of impairment, age of onset, and human capital.
In addition, the work environment should be analyzed in terms of
its impact on disability and work.
20. Use an extensive set of indicators that can be
reported monthly or annually to determine the progress in the employment
situations of people with disabilities.
A labor utilization framework goes beyond collecting
data on unemployment; it also collects data on part-time work, income
compensation, and the degree to which people are fully employed
in the labor force with respect to their human capital characteristics.
These types of measures would extend insight into the nature of
work disability.
21. Design well-written questions to measure work disability
that separate the notions of employment and disability.
Work limitations must be described in the data, not
by inference, as a function of environmental barriers and accommodation,
including transportation, along with individual impairment. Both
the National Center for Health Statistics and the Bureau of Labor
Statistics have cognitive laboratories that are experienced in question
design and could help address this issue.
22. Government surveys should collect the following
employment-related data for people with disabilities: age, gender,
race, region, veteran status, use of assistive technology, use of
accommodations, productivity measures with accommodations, workplace
flexibility, characteristics of the employer and the job, promotions
and training, social support, transportation, access to benefits
(including pensions, health insurance, and leave), qualifications
for employment (including education and literacy), condition and
impairment data (including severity, change over time, and age of
onset), labor force patterns, level of awareness of public programs,
impact of health insurance, motivational factors, social supports
for employment, family resources, income, and assets.
Some of these items will require the development of
new survey questions or the redesign of existing questions to reflect
the new disability paradigm and to ensure the accuracy of the results.
23. Develop questions to determine the extent to which
people with disabilities have access to the services and supports
they need, including assistive technology, long-term support services,
accessible community-based housing, and rehabilitation services.
24. Develop questions about voter registration and
participation by people with disabilities, and routinely monitor
these activities.
25. Develop and pilot-test measures for household and
living arrangement classifications that could be incorporated into
the sample frame enumeration used in the census and other surveys.
26. Ensure that any new disability questions reflect
variations in ethnic cultural understanding of disability.
BROADENING DISSEMINATION
The following action steps are recommended to broaden
dissemination.
27. Ensure that data and data analyses are disseminated
in alternative formats and that they are accessible to people with
all disabilities.
Formats such as Braille, large print, and computer
disks will enable blind and visually impaired people to participate
in all phases of disability research. Particular attention should
be given to presentation of quantitative data commonly formatted
in tables, graphs, and so on. Information should be formatted in
a manner suitable for screen readers and other devices used by people
with disabilities.
Access issues also apply for people with impairments
that do not involve reading print. Methods needed to ensure everyone's
participation in research depend on the specific research techniques
used for most of the sample; for example, a telephone survey needs
to accommodate direct participation by people with hearing and speech
impairments.
To put teeth into recommendations concerning accessible
materials, grants and contracts should be required to show what
time and budget allocations will be made to accomplish the goal;
peer review and agency review criteria should be established.
28. Federal agencies should develop requirements for
dissemination of data and data analyses so they are widely available
to the disability community, researchers, and other interested parties.
Federal agencies could require contractors and grantees,
as a part of an award stipulation, to produce an ASCII database
of raw data, a file of data definitions, and files of relevant data
and study documentation (properly cleaned, formatted, and disidentified)
for the sponsoring government agency at the end of the project period.
The agency could then determine whether to directly redistribute
the data and documentation for secondary statistical analysis and
educational purposes or to release the files to another organization
for public access.
Appendix I
Major Surveys
American Housing Survey
The American Housing Survey (AHS) is conducted every
other year by the American Housing Survey Branch of the Bureau of
the Census. In 1995, the sample consisted of approximately 61,000
units. The sample areas, called primary sampling units, are stratified
by region and urban/rural location. Both national estimates and
estimates of selected metropolitan areas are available. Housing
units form the sampling unit. An important feature of these surveys
is that generally the same housing units remain in the sample year
after year, and it is the housing unit rather than its occupants
that is followed.
Recommendations for improving the American Housing
Survey
- Improve the health and disability status section.
- Add a section to the instrument to obtain information
on supportive services in special units.
- Develop a subsample of specialized housing units
to permit the national profiling of trends in these settings.
- Structure the questionnaire and code the results
to ICIDH-2.
National Health Interview Survey and Disability Supplement
The National Health Interview Survey (NHIS) is a continuous
national survey sponsored by the National Center for Health Statistics.
It provides data on acute conditions, limitations of activities,
injuries, occupational disability, physician and dental visits,
and selected chronic conditions. It also provides standard demographic
information and some housing data. In 1994-95, a supplemental survey
on disability was conducted to obtain additional information on
the living arrangements and caregiver resources of this population.
The survey instrument for the supplement includes questions on activities
of daily living (ADL) and instrumental activities of daily living
(IADL), mental retardation and developmental disabilities; physical,
emotional, and cognitive impairments; transportation; employment
barriers; home access and accommodation; and use of services.
Recommendations for improving the National Health
Interview Survey and Disability Supplement
- Implement a regular schedule for fielding the disability
supplement.
- Add a more complete housing component, perhaps
using the American Housing Survey format for categorizing special
places housing within the disability supplement.
- Extend the quality-of-care questions to all ages
among the disability group. (Presently, many of the quality-of-care
items apply to the age 70+ population only.)
- Structure the questionnaire and code the results
to ICIDH-2.
Decennial Census of Population and Housing
The Decennial Census encompasses the entire U.S. population.
It provides data accumulated at the census tract level on household
demographics, income by source, labor force participation, occupation,
and type of dwelling. The number and relationships of persons in
each household are also compiled. Included among the many tabulations
and tape files is a summary statistics file representing a 100 percent
count of persons in group quarters. The group quarters category
includes persons in institutions and noninstitutions.
Recommendations for improving the Decennial Census
of Population and Housing
- The most practical change would be to clarify the
enumeration process for the multitude of specialized living arrangements
and to create data files and tabulations that are specific to
the settings.
- The housing or living arrangements categories should
be consistent with those in the American Housing Survey. The Bureau
of Census conducts the AHS, the NHIS, and the Decennial and Current
Population surveys, reducing the barrier to the creation of common
definitions and cross-identification.
- Consider adding questions applicable to specialized
living settings that describe the physical and staff characteristics
of facilities, as well as the services provided.
- Structure the questionnaire and code the results
to ICIDH-2.
Medicare Current Beneficiary Survey
The Medicare Current Beneficiary Survey (MCBS) is
sponsored by the Health Care Financing Administration as an ongoing,
multipurpose survey conducted among a probability sample of Medicare
beneficiaries. Also collected are data on health conditions, functional
status, health care utilization, and demographics, including income
and vital statistics. To date, there has been only one survey round
in which a supplementary interview was conducted with a particular
set of survey recipients; in this case those receiving home health
care.
Recommendations for improving the Medicare Current
Beneficiary Survey
- The addition of a more detailed housing classification
would enhance the utility of MCBS for tracking supportive housing
arrangements.
- The ability to organize living arrangement information
by the health and functional status of household members would
be useful in differentiating licensed from unlicensed supportive
housing arrangements.
- Consider periodic supplemental surveys of specialized
housing as a means of expanding knowledge of the population living
in such settings.
- Data analysis should recognize that the sample
is restricted to persons covered by Medicare and is not necessarily
representative of the disability community as a whole.
- Structure the questionnaire and code the results
to ICIDH-2.
Social Security New Beneficiary Survey
This survey, sponsored by the Social Security Administration,
provides longitudinal data on disability and aging of new beneficiaries
under Title 11 (workers with disabilities). Personal interviews
are conducted with a random sample of noninstitutionalized beneficiaries
and their spouses. The first wave was collected in 1982, and the
second wave was conducted in 1992. Data collected include demographics,
employment and income, health conditions that limit ability to do
work, and limitations of activities (ADL and IADL). There are also
data on long-term care in residential facilities.
Recommendations for improving the Social Security
New Beneficiary Survey
- The housing, living arrangements, and services
section of the instrument should be brought into alignment with
whatever changes are made in the Medicare Current Beneficiary
Survey.
- Like the MCBS, the Social Security Beneficiary
Survey is directed only at a specific service population. Therefore,
the problem of excluded individuals cannot be easily addressed.
- Structure the questionnaire and code the results
to ICIDH-2.
Survey of Income and Program Participation (SIPP)
SIPP is a panel survey of the economic conditions
of people in the United States. It is designed to provide detailed
information about income distribution and about federal and state
income transfer and service programs. It also provides information
about limiting conditions among respondents 15 years and older.
Disability data for children ages 0 through 14 are obtained from
their parents. SIPP contains information on economic and social
variables of persons with disabilities that are not usually included
in health surveys that ask about disability.
Recommendations for improving the Survey of Income
and Program Participation
- Include better data on impairment in SIPP, perhaps
by using International Classification of Diseases codes, so that
the specific impairment can be more accurately linked to the employment
outcome experienced by the person in a workplace.
- Use SIPP as a complementary data source to the
Current Population Survey (CPS) to describe the employment patterns
of persons with work disabilities. The CPS is used to provide
the monthly unemployment rate for persons in the United States.
Extending that set of indicators would allow reporting not only
on the unemployment rate but also on the levels of full employment
among persons with and without disabilities.
- Structure the questionnaire and code the results
to ICIDH-2.
Appendix
II
Mission of the National Council on Disability
Overview and Purpose
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.
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; as well as 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 to health care, and policies that operate
as disincentives for individuals to seek and retain employment.
- Making recommendations to the President, the Congress,
the Secretary of Education, the Director of the National Institute
on Disability and Rehabilitation Research, and other officials
of federal agencies regarding 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,
with 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 Americans with Disabilities Act
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 the National Institute on Disability
and Rehabilitation Research 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 and conduct of the Rehabilitation Services Administration.
- Making recommendations to the Director of the National
Institute on Disability and Rehabilitation Research on ways to
improve research, services, 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 this 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 an annual report titled National Disability Policy:
A Progress Report.
- Preparing and submitting to the President and Congress
an annual report containing a summary of the activities and accomplishments
of the Council.
International
In 1995, NCD was designated by the Department of State
to be the official contact point with the U.S. government for disability
issues. Specifically, NCD interacts with the special rapporteur
of United Nations Commission for Social Development on disability
matters.
Consumers Served and Current Activities
While 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 NCD that originally proposed what eventually
became ADA. NCD's present list of key issues includes improving
personal assistance services, promoting health care reform, including
students with disabilities in high-quality programs in typical neighborhood
schools, promoting equal employment and community housing opportunities,
monitoring the implementation of ADA, improving assistive technology,
and ensuring that persons with disabilities who are members of minority
groups fully participate in society.
Statutory History
NCD 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.
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Administration on Developmental Disabilities and National
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Conference. Washington, DC: Author.
Eustis, N. N., Clark, R. G., & Adler, M. C. (1995,
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and analysis. Washington, DC: Office of Disability, Aging, and Long-Term
Care Policy, U.S. Department of Health and Human Services.
Interagency Committee on Disability and Rehabilitation
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Maynard, R., & Newcomer, R. (1996). An assessment
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Author.
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National Institute on Disability and Rehabilitation
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