Improving Federal
Disability Data
Position Paper
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax
Lex Frieden, Chairperson
January 9, 2004
Synopsis
Every 10 years, the U.S.
Census Bureau conducts a complete accounting of every resident in
the United States. While there is no Congressional mandate requiring
an accurate enumeration of Americans with disabilities by the Decennial
Census, communities and people with disabilities will be affected
if the Decennial Census is inaccurate. Census data are used by educators,
policymakers, and community leaders and directly affect funding
for many programs critical to individuals with disabilities, including
programs for health care, transportation, employment training, and
housing. Federal, state, and county governments use Census information
to guide the annual distribution of hundreds of billions of dollars
in critical services and supports. While there have been some improvements
in the use of a few disability questions and interview methodology
in the Decennial Censuses for the past 30 years, those improvements
have been small and incremental. At a time when cash strapped states
are grappling with major unmet human service needs, and increasing
numbers of people who require a range of services and supports from
federal-state programs, the ability of our nation's public leadership
is at an all time high to provide accurate Decennial Census (and
related federal survey data) to states and locales. This paper addresses
these issues and provides some recommendations for consideration
by the Federal Government which include: (a) The U.S. Congress should
legislatively require an official and accurate enumeration of Americans
with disabilities through the Decennial Census, through related
national Census-like efforts (e.g., American Community Survey);
(b) The U.S. Census Bureau should immediately revise Census questions
for the Year 2010 Census (and the American Community Survey) to
reflect the ADA definition; and (c) The Bureau of Labor Statistics
should finish its work with all due haste under the Executive Order
13078.
Overview
The Decennial Census of Population has been taken
every ten years since 1790. 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.
The U.S. Constitution requires the use of Census data
in determining the number of seats each state has in the House of
Representatives. Census data is also used to determine voting district
boundaries with states. Government agencies, businesses, social,
and non-profit organizations use Census data to determine need and
best locations for services.
The Decennial Census has two parts: the short form,
which counts the population; and, the long form, which obtains demographic,
housing, social, and economic information from a 1-in-6 sample of
households. Information from the long form is used for the administration
of federal programs and the distribution of billions of federal
dollars.
In fact, more than $185 billion in federal funds are
distributed annually to localities based on Census data. By law,
the Census Bureau must deliver population counts for each state
to the President by December 31st to determine the number of members
of the U.S. House of Representatives each of the 50 states is entitled
to have. The Census Bureau is required to provide small-area population
counts to the legislature and governor of each state by April 1
for use in redrawing Congressional and state legislative district
boundaries.
The Census is also an important source of data on
the population of people with disabilities. The demand for data
on the number and characteristics of persons with disabilities derives
from the need to develop and evaluate programs, and from the need
to monitor the nation's success in removing barriers to quality
employment. The Census is usually the only available source of disability
data for the evaluation of conditions at the state and local level.
Census data also help to monitor the social and living conditions
of persons with disabilities in terms of school attendance, educational
attainment, marital status and living arrangements. It should be
reiterated, though, that there is no statutory mandate that the
Census Bureau ensure an accurate enumeration of all Americans with
disabilities through the Decennial Census.
Policy makers have recognized that an accurate Census
can provide valuable information to improve the policy process.
Today, policy makers at all levels of government, and many other
stakeholders, rely on an accurate Census in various ways that range
far beyond the basic fact of how many people live in each state.
Inaccuracies in the Census count, however, can cause federal funds
to be distributed in a way that is not fully consistent with congressional
intent. Many state-funded grant programs to localities also rely
on Census counts, compounding the misallocation of grant money.
For those jurisdictions that are counted relatively poorly by the
Census, this may translate into fewer services for families with
service and support needs provided through various federally funded
programs.
Uses of Census Data and Information
As mentioned previously, governments, businesses,
social and non-profit groups use Census data and, increasingly,
they have been asking for more and better Census disability data
and information.1
1. Federal Government. Certain questions provide
critical information for monitoring compliance with the Voting Rights
Act, the Civil Rights Act, and other anti-discrimination and affirmative
action plan requirements. For example, the U.S. Department of Transportation
uses Census data on disability for traffic analysis zones to monitor
compliance with the Federal Transit Act and the Americans with Disabilities
Act.
Accurate Census data are required to determine and
forecast the number of persons eligible for benefits based on age,
such as Social Security and Medicare and to forecast the number
of persons eligible for Social Security disability benefits. Accurate
Census data are necessary to develop baselines for reducing employment
barriers faced by persons with disabilities and to allocate funds
for vocational education and rehabilitation programs for workers
with disabilities. Accurate Census data are required to determine
where to build veterans hospitals, to establish baselines for veteran
population projections, and to report to Congress on the needs of
selected groups of veterans.
The accuracy of Census data affects the allocation
of funding for numerous Federal education programs such as vocational
and adult education.
2. State and Local Government. Decisions on
redistricting and the determination of state and local voting district
boundaries require accurate Census data. Accurate Census data are
necessary for appropriate state planning and implementation of a
variety of Federal programs. Accurate Census data are critical for
programs that aim to identify areas eligible for housing assistance
and rehabilitation loans; housing subsidies; job training and employment
services; energy cost assistance; and community economic development.
Accurate Census data also are critical to allocating funds for supplemental
food programs and other social services for women and children.
Accurate Census data also help city and community officials pinpoint
areas that need special programs such as meals-on-wheels and social
service agencies identify special needs such as telephone access
in case of medical emergency.
Accurate Census information helps local governments
predict transportation needs in emergency preparedness and disaster
recovery and contingency planning initiatives. The data help governments
and relief agencies in assessing the amount of the shelter and recovery
needs of populations affected by: natural disasters such as floods,
hurricanes, tornadoes, and earthquakes; and, by unnatural disasters
such as domestic or foreign terrorism .
3. Business and Industry. Accurate Census data
on where people of different ages live helps, architects, contractors,
and real estate firms that need accurate information on the size
and composition of households and their housing as they design,
build, and sell (accessible) houses and apartments.
Accurate Census data help businesses set up and monitor
affirmative action and anti-discrimination plans. And they help
companies comply with anti-discrimination legislation such as the
Equal Employment Opportunities Act.
4. Community Groups. In many cases, private
social service agencies and community groups have the same needs
for accurate Census data as state and local government agencies
that provide social services. Private groups benefit from accurate
Census data to set up and administer assistance programs for children,
teens, and older persons; to provide services that reflect cultural
differences; to teach English, and conduct voter registration drives.
5. Academic Research. Accurate Census data
are vital to researchers in a wide variety of endeavors. Some of
the most important needs include: (a) Any research requiring comprehensive
information at the neighborhood level must rely on the Census, with
its tract level information; (b) Research on disability, ethnicity
or other research requiring reasonable numbers of observations of
relatively small population groups must rely on the Census; and
(c) The Decennial Census is the only consistent source of data for
researchers examining trends over periods of decades.
6. Uses by Other Surveys and Data Collections.
The Decennial Census serves as an important base for other surveys
- for example through the development of population sampling units
(PSUs). Data from the Decennial Census form crucial input into the
sample designs of other national surveys such as the Current Population
Survey (the source of the nation's unemployment statistics), the
Survey of Income and Program Participation, the National Crime Victimization
Survey, the Survey of Recent College Graduates, the Consumer Expenditure
Survey (the source for expenditure weights used in calculating the
Consumer Price Index), and statistics compiled by the National Center
for Educational Statistics (NCES) and the National Center for Health
Statistics (NCHS). For example, NCHS uses its own survey data combined
with Census data to calculate numerous vital statistics and rates
for health service utilization. Similarly, the Bureau of Justice
Statistics uses Census data to calculate imprisonment and victimization
rates. Census data are used to adjust surveys to be nationally representative.
For example, the NCES uses Census data to make its survey results
on education indicators reflect the total United States population.
Issues Around Disability Data for Censuses During
the 1970s to 1990s
Questions about "disability status" were asked in
the Censuses of 1970, 1980, and 1990. The 1970 Census was the first
Decennial Census in many decades to contain a disability item, and
the content of that item indicated a concern with the size and growth
of programs that provided benefits to individuals who were "unable
to work." The 1970 Census contained three questions about work disability:
(a) whether the person had a condition that limited the kind or
amount of work that could be done; (b) whether the condition kept
the person from holding any job at all; and (c) the length of time
the person had been limited in the ability to work.
The 1980 Census disability item was adopted only after
an extensive testing effort that attempted to develop a disability
item that would cover several major life activities, including:
doing school work, driving a car, using public transportation, taking
care of personal needs, and doing housework. Screener question used
in National Content Tests, checking for the reliability with which
persons reported limitations in specific activities, conducted prior
to the 1980 and 1990 Censuses showed that persons generally did
not provide reliable responses. Based on concerns about reliability,
and facing unusual space constraints on the Census questionnaire,
the 1990 disability items were limited to two questions: one question
about work disability; one question about health and related difficulty
going outside alone and/or about taking care of personal needs.
As America began to prepare for the 2000 Census, major
forces shaped the Federal Government's thinking about disability
questions to be included in the questionnaire. First, 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 formed the foundation
of disability policy, this new paradigm offered a civil rights orientation
that focuses on societal barriers to full participation rather than
the functional impairments of the individual. The disability community
embraced ADA as its declaration of independence, one that articulated
a vision of an accessible and equitable society.
However, the vast majority of data collection activities
of the Federal Government retained the medical bias and had not
yet adopted the new paradigm. Examples of medical bias were to be
found in questions about work in population-based surveys such as
the Decennial Census. Questions in the Census survey focused on
the individual's impairment and functional level but failed to identify
barriers in society and the environment-such as discrimination and
lack of accommodations in the workplace-that were potential obstacles
to employment, assuming instead that the obstacles to employment
resided solely with the individual as a result of the impairment
itself.2
Second, the size of major government-funded programs-such
as Social Security disability, Supplemental Security Income disability,
and Medicare disability-that provide benefits to persons with disabilities
that kept them from working was very large and continued to grow.
Third, the work disability questions that had been
asked in the 1970, 1980, and 1990 Censuses and that continued to
be asked in the Survey of Income and Program Participation and in
the March Current Population Survey had been criticized as unreliable
by many experts.3
And fourth, one of the disability questions asked
in the 1990 Census provided results that were deemed unsatisfactory.
Based on data from the 1990 Content Reinterview Survey (CRS), the
question about whether a person had difficulty taking care of personal
needs produced responses that were unreliable and biased upwards.
The CRS results suggested that the 1990 Census rate of "difficulty
with self-care needs" was about twice the true level.
In light of these criticisms, and in recognition that
there had been minor improvements in the disability questions in
previous Censuses, interagency discussions and research activities
held in preparation for the 2000 Census were intense.4
The interagency group:
". reviewed questions initially proposed by the
Census Bureau, developed an alternative proposal, tested both
versions in the Census Bureau's cognitive questionnaire lab, and
on the basis of testing, derived a consensus version for Census
2000." (p. 21)
Issues Around Disability Data and Information
for Census 2000
Census questions about disability are designed to
provide information that helps to define disability as a limitation
in the ability to perform one or more major life activities. The
two disability items included in Census 2000 aimed to obtain information
about health conditions that limit an individual in activities such
as working at a job, going outside the home alone, and taking care
of personal needs such as bathing, dressing or getting around inside
the home. The individual activities were themselves of interest,
and Census officials believe that the ability to identify persons
with a limitation in one or more activities helps determine a valid
overall measure of disability status. The two disability questions
contained in Census 2000 were newly designed to address acknowledged
shortcomings in the two disability questions contained in Census
1990.
Early "reports" about the quality and integrity of
Census 2000 data and information, particularly as it relates to
or affects people with disabilities in America, are now available.
One report involves an analysis by the U.S. Census Monitoring Board
that estimated that Census 2000 undercounted the actual U.S. population
by a net of over three million individuals, representing an undercount
rate of 1.18 percent5.
This type of inaccuracy certainly has major implications
for Americans with disabilities who rely on state and local government
run programs that rely, in part, on adequate levels of federal service
and supports funding. For example, according to the U.S. Census'
Monitoring Board Final Report to Congress from 2001, the estimated
undercounts of Census 2000 will result in funding losses to eight
federal grant programs which affect millions of Americans with disabilities.
More specifically, according to the Final Report to Congress, 31
states will be affected by funding losses for Fiscal Years 2002-2012
with projected funding losses in the millions of dollars as follows:
Medicaid at 3,735; Foster Care at 82; Rehabilitation Services at
72; Child Care and Development Block Grants at 48; Substance Abuse
Block Grants at 44; Vocational Education at 33; Adoption Assistance
at 32; and, Social Services Block Grants at 27. At a time when most
of the states are in dire fiscal straits, these funding losses will
have devastating effects at the program, community, and individual
levels.
A second assessment or analysis looked at the impact
that survey methodology had in Census 2000 and the Census 2000 Supplementary
Survey (C2SS).6 Among the conclusions made based on this
analysis include:
"..two surveys-C2SS and Census 2000-administered
in the same year found divergent disability rates in the same
population." (p. 29)
and
"The Census 2000 enumerators found a questionable
number of people with an employment disability, especially since
both the C2SS and Census 2000 mail respondents reported this type
of disability at the same rate." (p. 30)
A third report provides an additional view and some
new information by the Census Bureau.7 While praising
most Census 2000 figures as "the best data ever collected," Census
officials also described the group quarter data as "weak" and urged
people to "use some caution" in relying on them for analysis. This
official caveat is based on the evaluations that found problems
with the count of people living in "group quarters" including such
institutions as mental hospitals and group homes, as well as prisons.
Finally, a visual review of the Census 2000 Tables
DP-2, Profile of Selected Social Characteristics indicates that
no national data was collected for people representing the disability
status of the civilian noninstitutionalized population who were
0 to 5 years of age. This will likely have negative implications
for a range of interested stakeholder groups, particularly at the
program and community levels. For example, the Census Bureau estimates
that a total of 649,000 children under age 6 years had some type
of disability in 1999 according to the Survey of Income and Program
Participation (SIPP).8 According to this report, the
Census Bureau estimates:
"Children under age 6 were twice as likely
to have a developmental disability (2 percent) as they were to
have difficulty with movement (1 percent)." (p. 19-3)
Accurate data about such young children with disabilities
is important to educators, as well as to healthcare and childcare
providers. For example, educators rely on Decennial Census data
to prepare short-term and long-term projections for possible changes
regarding: school facilities development and improvement; curricula
development and modifications; personnel hiring; and, professional
development. Given federal policy makers' current concern and efforts
to vastly improve the nation's early childhood education and intervention
programs (e.g., Head Start), the lack of Decennial Census data on
children with disabilities under 6 years of age may serve as a barrier
to long-term planning and improvements in this arena.
Current Efforts
There are two federal disability-related data collection
efforts that are directly related to the Decennial Census: the U.S.
Census Bureau's American Community Survey (ACS), and the Bureau
of Labor Statistics' Current Population Survey (CPS).
The ACS is a nationwide survey designed to provide
communities a fresh look at how they are changing. It is a critical
element in the Census Bureau's reengineered 2010 Census. Because
the richness of Census data are available only once every 10 years,
long-form information becomes out of date. Planners and other data
users are reluctant to rely on it for decisions that are expensive
and affect the quality of life of thousands of people. The ACS is
a way to provide the data communities need every year instead of
once in ten years. It is an on-going survey that the Census Bureau
plans will replace the long form in the 2010 Census, and may likely
be used to collect and report nationally representative disability
data before the next Decennial Census is due.
The ACS is conducted under the authority of Title
13, United States Code, Sections 141 and 193. Full implementation
of the ACS is planned in every county of the United States, pending
Congressional funding. The survey would include three million households.
Data are collected by mail and Census Bureau staff follow up with
those who do not respond. The American Community Survey will provide
estimates of demographic, housing, social, and economic characteristics
every year for all states, as well as for all cities, counties,
metropolitan areas, and population groups of 65,000 people or more.
Since September 2002, the ACS Disability Subcommittee
has met on a regular basis. A number of federal entities are members
of the Subcommittee (Social Security Administration, Assistant Secretary
for Planning and Evaluation, Federal Communications Commission,
Bureau of Labor Statistics, Department of Education, Agency for
Healthcare Research and Quality, National Institute of Mental Health,
Department of Housing and Urban Development, National Center for
Health Statistics, Department of Veterans Affairs, Census Bureau,
Office of Management and Budget, and National Council on Disability).
The Subcommittee's work includes drafting both new and modified
questions on disability that approximate the space constraints of
the Census 2000 questions on disability, and which may be cognitively
tested over the next 18 months. This Subcommittee is awaiting results
of the questions being developed by the Bureau of Labor Statistics
(BLS) to identify people with disabilities in response to Executive
Order13078 through its redesign of disability employment questions
for the BLS Current Population Survey (CPS). NCD has previously
addressed the issues involving the CPS and the need for its redesign
of disability items and infusion into the Decennial Census.9
Presumably, then, if the redesigned CPS questions-based
on E.O. 13078-prove to be valid and usable, the Census Bureau will
then incorporate those questions into the ACS. If the redesigned
CPS questions are not determined to be valid and usable, BLS may
then turn to the ACS Disability Subcommittee to see if their drafted
questions yield valid and usable items as a result of cognitive
testing and field tests. It remains to be seen which, if any effort,
will succeed.
Conclusions and Recommendations
Over a period of 30 years, the nation has made some
small progress in the quality and reliability of disability questions,
and survey methodology used for the Decennial Census. Other national
surveys (e.g., CPS) have shown little or no improvement in the reliability
and quality of their disability data and information collection.
Efforts to improve some of these surveys, particularly as they affect
and relate to the Census, have been underway for a number of years
and may soon bear fruit.
The early returns and analyses of Census 2000 (disability)
data and information highlight a number of areas in need of significant
improvement. In the absence of Congressional authorization and sufficient
funding for an accurate and complete enumeration of Americans with
disabilities through the Decennial Census, as well as its proposed
successor the American Community Survey, we may only be able to
see small and incremental progress in the quantity and quality of
federal Census information representing tens of millions of Americans
with disabilities. Americans expect more from their government and
their leaders than small, incremental progress in this critical
data and information area.
Because of the critical need for comprehensive Census-based
data regarding individuals with disabilities, and the need to adequately
allocate federal funding including the group quarters circumstances
of people with disabilities, NCD acknowledges that the total number
of persons with disabilities in the United States is comprised of
both a subset of the civilian institutionalized population (involving
people with disabilities) plus the civil non-institutionalized population
of people with disabilities.
Because of the critical and urgent need for reliable
and comprehensive national level data regarding individuals with
disabilities, NCD makes the following recommendations:
1. The U.S. Congress should legislatively and timely
require an official and accurate enumeration of Americans with disabilities
through the Decennial Census, through related national Census-like
efforts (e.g., American Community Survey), as well as through related
national level data collection efforts (e.g., Current Population
Survey). A legislative mandate is that is appropriately funded is
the only way that the Federal Government will be able to move from
the piecemeal approaches to improving Census disability data collection
it has maintained over the past 30 years to a more comprehensive
and authorized reform.
2. The U.S. Census Bureau should immediately revise
Census questions for the Year 2010 Census (and the American Community
Survey) to reflect the ADA definition. Numerous federal agencies
have been working to revise the 2000 Census questions on disability
for use in the Census' successor, the ACS. Such efforts should proceed
and the ACS Disability Subcommittee should ensure that the questions
that are developed reflect the paradigm of thinking about disability
embodied in ADA. Questions that do not should not be recommended
to the Census Bureau for consideration for use in the ACS.
3. The Bureau of Labor Statistics should finish its
work with all due haste under the Executive Order 13078. It should
report the results of its cognitive and field test as soon as practicable.
If the results of its work under E.O. 13078 do not yield valid and
usable questions for incorporation into the Census 2010 or the American
Community Survey and the Current Population Survey, perhaps the
work of the ACS Disability Subcommittee will yield useful and valid
survey items.
The National Council on Disability wishes to
acknowledge Martin Gould for his work in the preparation of this
document.
1 National Academies Press (1995). Modernizing
the U.S. Census (pp. 264, 274-276, 304), Barry Edmonston and Charles
Schultze (Eds.), Author: Washington, D.C.
2 National Council on Disability (1998).
Reorienting Disability Research. Author: Washington, D.C. Available
at http://www.ncd.gov/newsroom/publications/1998/reorienting.htm
.
3 See, for example, the three reports issued
by the Presidential Task Force on Employment of Adults with Disabilities
(PTFEAD): Recharting the Course, 1998 Report to the President; Recharting
the Course: If Not Now, When? 1999 Report to the President; Recharting
the Course: Turning Points, Third Report to the President, 1999.
See also, John McNeil (June 29-July 3, 2000). Employment,
earnings, and disability (pp. 16-17). Paper presented at the 75th
Annual Conference of the Western Economic Association International,
Vancouver, B.C.
See also, Linda Levine (August 15, 2000), Congressional
Research Service issue brief, "The Employment of People with Disabilities
in the 1990s," RL30653.
See also, Tom Hale (2001). The lack of a disability
measure in today's Current Population Survey, Monthly Labor Review
Online, v. 124, n. 6, at http://www.bls.gov/opub/mlr/2001/06/ressum1.htm.
See also, National Council on Disability (June 21,
2001), National Disability Policy: A Progress Report, at http://www.ncd.gov/newsroom/publications/2001/progressreport2000.htm.
4 Michele C. Adler, Robert F. Clark, Theresa
DeMaio, Louisa F. Miller, and Arlene F. Saluter (1999), Social Security
Bulletin, v. 62, n. 4, pp. 21-30.
5 For example, the U.S Census Monitoring
Board (September 1, 2001), Final Report to Congress, p. 119, Figure
A, Estimated Effect of Census 2000 Undercount on Eight Federal Grant
Programs.
6 Sharon M. Stern (July 25, 2003). Counting
people with disabilities: How survey methodology influences estimates
in Census 2000 and the Census 2000 Supplemental Survey. Prepared
for the Annual Conference of the American Statistical Association,
San Francisco, CA. U.S. Census Bureau: Washington, D.C.
7 D'Vera Cohn (November 25, 2003), Census
Bureau Praises Data: 2000 Figures Weakest for Hispanics, Mixed Race
People. Washington Post, A 27.
8 U.S. Census Bureau (2000). Population
Profile of the United States: 2000. (Internet Release). Available
at http://www.census.gov/population/pop-profile/2000/chap19.pdf.
9 See, for example, National Council on
Disability (June 4, 2001). National Disability Policy: A Progress
Report, available at http://www.ncd.gov/newsroom/publications/2001/progressreport2000.htm
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