Series 4, Number 32 July 2002

Integrating Measurements

of Disability in Federal

Surveys: Seminar

Proceedings
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proceedings. National Center for Health Statistics. Vital Health Stat 4(32). 2002.

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Integrating measurements of disability in federal surveys: seminar proceedings.

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Series 4, Number 32

Integrating Measurements of

Disability in Federal Surveys:

Seminar Proceedings

Documents and Committee Reports

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

National Center for Health Statistics

Hyattsville, Maryland

July 2002

DHHS Publication No. (PHS) 2002-1469
National Center for Health Statistics

Edward J. Sondik, Ph.D., Director

Jack R. Anderson, Deputy Director

Jack R. Anderson, Acting Associate Director for

International Statistics

Jennifer H. Madans, Ph.D., Associate Director for Science

Lawrence H. Cox, Ph.D., Associate Director for Research

and Methodology

Jennifer H. Madans, Ph.D., Acting Associate Director for

Analysis, Epidemiology, and Health Promotion

P. Douglas Williams, Acting Associate Director for Data

Standards, Program Development, and Extramural Programs

Edward L. Hunter, Associate Director for Planning, Budget,

and Legislation

Jennifer H. Madans, Ph.D., Acting Associate Director for

Vital and Health Statistics Systems

Douglas L. Zinn, Acting Associate Director for

Management and Operations

Charles J. Rothwell, Associate Director for Information

Technology and Services
Contents

Foreword................................................................................................. iv

Background............................................................................................. iv

Acknowledgments ....................................................................................... iv

Abstract.................................................................................................. iv

Part 1. Disability Survey Papers Presented at the Federal Committee on Statistical Methodology Statistical Policy Seminar..... 1

Federal Efforts to Develop an Employment Rate for Adults with Disabilities—Thomas Hale...................... 3

Measures of Disability for the National Study of Health and Activity—Susan Kalasunas......................... 7

Integrating Comparable Measures of Disability in Federal Surveys: The National Center for Health Statistics—

Gerry E. Hendershot .............................................................................. 12

Developing the Capability to Measure Crime Victimization of People with Disabilities—Michael R. Rand ......... 24

Part 2. Discussion of Papers................................................................................. 39

Discussion of the Disability Survey Papers Presented at the Statistical Policy Seminar—Katherine D. Seelman...... 41

A Critique of Current Practices of Measuring Disability in Federal Surveys—Monroe G. Sirken.................. 42

iii
Foreword

Background

In November 2000, a statistical

policy seminar, ‘‘Integrating Federal

Statistical Information and Processes,’’

was convened by the Federal Committee

on Statistical Methodology and hosted

by the Council of Professional

Associations on Federal Statistics. The

seminar, which sought to foster

interagency integration of Federal

statistical information, provided the

Federal statistical community with

opportunities to learn about and

compare Federal agency practices in a

dozen important subject areas of general

interest. Disability statistics was one of

the subject areas highlighted at the

seminar. This publication is the

proceedings of session four ‘‘Integrating

Comparable Measures of Disability in

Federal Surveys.’’ Part 1 of this report

contains four papers that were presented

at session four. These papers describe

the ongoing efforts of four different

Federal statistical agencies to develop

and improve methods for counting

people with disabilities in their surveys.

‘‘Federal Efforts to Develop an

Employment Rate for Adults With

Disabilities,’’ the paper presented

Thomas Hale describes research at the

Bureau of Labor Statistics to produce

labor force statistics by disability status

from data collected in the Current

Population Survey. ‘‘Measures of

Disability for the National Study of

Health and Activity’’ presented by Susan

Kalasunas describes research at the

Social Security Administration (SSA) to

measure disability in a survey that is

designed to help SSA make informed

decisions about the future benefit needs

of disabled workers. In ‘‘Integrating

Comparable Measures of Disability in

Federal Surveys: The National Center

for Health Statistics,’’ Gerry Hendershot

presents an annotated inventory of

disability statistics activities at the

Center. ‘‘Developing the Capacity to

Measure Crime Victimization of People

With Disabilities,’’ presented by Michael

Rand describes research at the Bureau

of Justice Statistics to produce crime

victimization statistics by disability

status from data collected in the

National Crime Victimization Survey.

Part 2 of this report contains the

remarks of two discussants at session

four. The formal discussant was

Dr. Katherine D. Seelman, who was then

Director of the National Institute on

Disability and Rehabilitation Research. I

was an informal discussant, who made

some remarks during the open

discussion period at the conclusion of

the session.

Acknowledgments

Many thanks to the authors of the

four papers and the discussant for

participating in session four, and

preparing their presentations for this

publication. Three of the four papers

appear in Federal Committee Statistical

Methodology, Number 32, which

contains the proceedings of the Seminar

on Integrating Federal Statistical

Information and Processes. The paper

presented by Thomas Hale and the

remarks of the two discussants are

published here for the first time.

My special thanks to Gerry

Hendershot and Paul Placek. Their help

was invaluable in organizing this

session. This publication would have

been impossible without the support of

the National Center for Health Statistics.

My thanks to Dr. Edward Sondik for

permission to publish these proceedings

in the Center’s Vital and Health

Statistics series of reports. Publication in

this series assures wide circulation of

these proceedings in the health

community. However, the views

expressed in this publication are solely

those of the authors and do not

necessarily represent the official views

or positions of the National Center for

Health Statistics.

Lastly, a warm thank you to Karen

Whitaker for formatting and preparing

this report for publication.

Monroe G. Sirken

National Center for Health Statistics

Centers for Disease Control and

Prevention

April 30, 2002

Abstract

In November 2000, the Federal

Committee on Statistical Methodology

(FCSM) convened the seminar

‘‘Integrating Federal Statistical

Information and Practices’’ to foster a

greater awareness of the importance of

integrating statistical information issued

by different Federal agencies. Disability

statistics was one of a dozen crosscutting subject matter areas that were

discussed at the FCSM seminar. This

publication contains the proceedings of

the session on ‘‘Integrating Comparable

Measures of Disability In Federal

Surveys.’’ The first part of this

publication describes programs that

count people with disabilities in surveys

of four Federal statistical agencies: the

Bureau of Labor Statistics, the Social

Security Administration, the National

Center for Health Statistics, and the

Bureau of Justice Statistics. The second

part of this publication contains the

remarks of the sessions’ two discussants.

They recognize the significant progress

made by the four Federal agencies in

developing survey disability measures

responsive to their own agency needs

but conclude that by mandate or purpose

of the data collection, the disability

measures differ significantly between

agencies and interagency integration of

disability statistics will be difficult. The

discussants propose research and

funding strategies to improve disability

measurement integration among Federal

statistical agencies.

Keywords: disability measurement c

interagency coordination c missions of

Federal statistical agencies c survey

standards for disability measurement

iv
Part 1. Disability Survey Papers Presented at the Federal Committee on

Statistical Methodology Statistical Policy Seminar
Federal Efforts to Develop an

Employment Rate for Adults

With Disabilities

by Thomas Hale, Ph.D., U.S. Bureau of Labor Statistics

Subsequent to signing the appear to allow it to identify persons

Americans With Disabilities Act (ADA), with disabilities. The March Work

and the publication of the implementing Experience and Income Supplement of

regulations, there has been a strong the CPS has a question that asks if

interest in measuring the labor-force people have a health problem or

status of people with disabilities. Other disability that makes them unable to

protected classes are already identified work or limits the type or amount of

in labor-force data. This discussion will work they can do. It may seem on the

detail some of the efforts of the Federal face of it, that those who respond

Government to meet the need for positively to this question plus those

employment statistics for the disability who report income from a disability

population. program (another set of questions in the

The official source of labor-force March supplement) represent the

measures such as employment and disability population. The CPS disability

unemployment is the Current Population question, however, was designed to be a

Survey (CPS), sponsored by the U.S. screener for the income questions. The

Bureau of Labor Statistics (BLS) of the question focuses solely on the work

Department of Labor. The CPS is a aspect of disability, ignoring all other

monthly household survey of 50,000 possible facets, of which there are many.

households or about 100,000 people. There isn’t any evidence it effectively

BLS maintains tens of thousands of time identifies the broader disability

series based on the CPS, and there are population. In the main portion of the

potentially many more estimates that CPS, there is also a question on

could be created by combining various disability, and this question does an

demographic and labor force variables. even worse job of identifying persons

While other surveys such as the Survey with disabilities, especially if one wants

of Income and Program Participation to be able to compute employment and

(SIPP) and the National Health unemployment rates. In the monthly

Interview Survey (NHIS) contain CPS, respondents are asked if they did

employment questions, the CPS is the any work for pay or profit in the

official source of employment data. The preceding week. One of the response

concepts, reference period, and essential categories is ‘‘disabled.’’ It is only

survey conditions of the other surveys recorded if the respondent offers it as

are sufficiently different from that of the his/her explanation for NOT working.

CPS so that the other surveys are not No one is asked if they have a

effective substitutes for the CPS. Also, disability, whether or not they reported

the CPS is the official source of labor- working. Also, there are no probes to

force data for other protected classes determine whether this is a long-lasting

(e.g., blacks, Hispanics, women, and condition, a temporary one, or merely a

people age 40 and over), so it would be bad cold. Indeed, the response category

desirable to collect labor force data for is only provided to help streamline the

people with disabilities on the same interview for those who are not

basis. working. Also, some respondents may

In its current form, the CPS say they have a disability and later in

contains two sets of questions that the interview report that they did in fact

work or look for a job during the

reference week. In that case, their

disability response is edited out of the

file—erased—because, in the context of

the CPS and data derived from it, labor

force activity takes precedence over

nonlabor force status and, hence, a

response of disabled is viewed as

inconsistent with working or looking for

work. As a result, the only people for

whom the response category ‘‘disabled’’

remains on the file are those who are

classified as not in the labor force, that

is, persons who neither worked nor

looked for work. Hence, the CPS was

not designed to measure disability status

directly, and there is no accurate way to

derive data on the employment status of

the disabled from the CPS.

BLS was approached in 1996 by the

President’s Committee on the

Employment of People with Disabilities

and several other organizations and

asked to collect and publish disability

labor force statistics from the CPS. BLS

thought the need for disability

employment data was quite legitimate

and decided to try an experiment to see

if it was possible to meet the need,

within certain constraints, using the

CPS. The chief constraint was that the

collection of disability data did not

interfere with the primary mission of the

CPS—to gather data on the employed,

unemployed, and those not in the labor

force. Any disability questions would be

added to the demographic variables

already on the survey, such as sex, age,

race, and education. BLS did not think

it would be appropriate to define

disability in terms of the ability to work,

since this might influence the way

respondents answered the questions

relating to employment status (if the

disability questions were to precede the

labor force questions). In addition, a

work definition of disability is viewed

as being overly restrictive, and there is

an inherent circularity to defining

disability in this way and then cross

tabulating disability status with

employment status.

BLS planned a test that took the

purpose and the time and space

constraints of the CPS into account.

Page 3
Page 4 [ Series 4, No. 32

Two questions were drafted and a plan

was set to place the two questions in the

1996 Wave 4 of the SIPP. They would

be administered to the same individuals

(or their proxy respondents) who were

to be administered a long SIPP disability

battery in a later wave. The two

questions were:

1. This question concerns common

daily activities such as seeing,

hearing, walking, climbing stairs,

driving a car, or going out to shop

for groceries.

Does . . . have a LONG-TERM

physical or mental condition that

makes it difficult to perform any of

these kinds of activities?

Yes

Yes—sometimes

No (go to next section)

The field representative instruction

said: By ‘‘LONG-TERM’’ we mean

any condition expected to last at

least 6 months. Mark the second

category if the respondent

volunteers that the condition

‘‘sometimes’’ affects activities.

2. Does...’s condition

SUBSTANTIALLY LIMIT...’s

ability to perform any common

daily activities; again, I am talking

about seeing, hearing, walking,

climbing stairs, driving, shopping or

other everyday activities?

Yes

Yes—sometimes

No

Included was a field representative

note which stated: ‘‘By

‘SUBSTANTIALLY LIMIT’ we

mean the person has great difficulty

performing the activity, needs

someone’s help to perform the

activity, or is unable to perform the

activity.’’

The limitations cited in the

questions correspond well to those in

both the SIPP and the ADA. In fact, the

SIPP was a particularly appropriate

survey in which to conduct the test

because several of the terms in these

questions were already operationalized

in the SIPP, and the concepts in the two

classification schemes (the test questions

and the regular SIPP) were parallel. For

example, many of the activities that are

asked about in the group format of the

test questions (i.e., seeing, hearing,

walking, climbing stairs, driving,

shopping, or other everyday activities)

are asked as separate questions in the

SIPP disability battery. Many of the

SIPP questions have two parts, used in

the classification scheme to differentiate

between those with moderate and severe

disabilities. Once a person says that they

have difficulty performing a task, the

next question probes if the person is

able to perform the task with the

assistance of others or unable to perform

the task at all. Thus, in SIPP and in the

test questions, the algorithm is such that

if a person has difficulty with a task,

they would be classified as having a

moderate disability, and if they needed

help or were unable to perform the task,

they would be classified as having a

severe disability.

As indicated above, the object of

the test was to determine if the short

questions could identify the same

individuals as the longer battery of

questions. It would also allow BLS to

determine if the test questions could

separate disabled individuals into two

groups—those with moderate and severe

disabilities.

The 1996 Panel, Wave 4 of the

SIPP was asked the two short

classification questions (above), and

then, three months later, the full SIPP

was administered to the same

individuals. The test results were far

from satisfactory.

The table indicates that the test

questions identified about 95 percent of

the people that the full SIPP identified

as having no limitation, and 63 percent

of those that the full SIPP identified as

having a severe limitation, but only

8 percent of those with a moderate

disability.

At this time, an ad hoc group,

consisting of representatives from BLS,

the President’s Committee on the

Employment of People with Disabilities,

the Department of Labor’s Assistant

Secretary for Policy, the U.S. Census

Bureau, the National Center for Health

Statistics, the National Institute on

Disability and Rehabilitation Research,

and the University of California—San

Francisco’s Center for Disability

Statistics assembled to analyze the data

from the SIPP and the test questions.

Several different algorithms were used

to define disability to see if that

explained the differences between two

groups, without success. The data were

checked and errors were ruled out.

On March 17, 1998, President

Clinton signed Executive Order 13078,

which established the Presidential Task

Force on the Employment of Adults

with Disabilities. The Task Force,

chaired by Alexis Herman and Tony

Coehlo, with Becky Ogle as Executive

Director, is responsible for coordinating

several mandates identified in the

Executive order. One directs: ‘‘The

Bureau of Labor Statistics of the

Department of Labor and the Census

Bureau of the Department of Commerce,

in cooperation with the Departments of

Education and Health and Human

Services, the National Council on

Disability, and the President’s

Committee on the Employment of

People with Disabilities shall design and

implement a statistically reliable and

Table 1. Percent comparison of test question responses to Survey of Income and Program

Participation responses

Disability type NHIS NHANES LSOA NNHS NHHCS NMFS

Seeing ................. ! ! ! ! !

Hearing ................ ! ! ! ! !

Speaking ............... !

Moving/mobility ........... ! ! ! !

Body movements .......... ! ! ! ! ! !

Gripping/holding ........... ! ! !

Learning ................ ! ! ! !

Behavioral problems ........ ! !

Personal care ............ ! ! ! ! ! !
Series 4, No. 32 [ Page 5

accurate method to measure the

employment rate of adults with

disabilities as soon as possible...’’ In

response, the Task Force established the

Employment Rate Measurement

Methodology (ERMM) Work Group,

and appointed Philip Rones, Assistant

Commissioner Current Employment

Analysis in BLS to its chair.

The Work Group consists of about

17 Federal agencies. The initial

meetings took up issues such as the

purpose and need for collecting data and

the concept of disability given the

definitions in the Executive order. The

Executive order defines disability in

terms of the first prong of the definition

in the Americans With Disabilities Act

(ADA): ‘‘An adult with a disability is a

person with a physical or mental

impairment that substantially limits at

least one major life activity.’’ The Work

Group spent some time exploring the

implications of various disability

definitions and the related need by the

agencies for specific types of

employment data. The meetings later

evolved into discussions of

methodological issues.

At this time, confidence in the SIPP

was severely shaken when Jack McNeil,

the disability expert at the U.S. Census

Bureau, indicated that the test questions

placed in the SIPP might not be so bad,

and that perhaps a large part of the

problem lies with the SIPP itself. He

soon produced the data to prove his

point. Table 2 shows the percent of

people who reported having a severe

disability in time 1 (October 1993–

January 1994) and still reporting a

severe disability a year later, in time 2

(October 1994–January 1995).

Table 2. Percent of individuals who

reported having a severe disability in time

1 and time 2

Disability Percent

Work disability ............ 78.6

Using wheelchair .......... 61.7

Speaking ............... 38.3

Seeing ................. 25.2

Hearing ................ 20.7

Walking ................ 47.6

Handling money ........... 49.1

SOURCE: Survey of Income and Program Participation. U.S.

Census Bureau.

Census double-checked the data,

and also determined that the reliability

problem was not a function of

self/proxy responses. No satisfactory

explanation for this phenomenon has

been advanced. Importantly for our

research effort, the SIPP could no longer

be considered a gold standard against

which we could evaluate other question

sets.

The Work Group and BLS have

settled on a strategy for generating the

disability classification questions. First,

an annotated bibliography of disability

survey instruments was compiled to

determine what survey questions were

available, and what research had been

conducted on their accuracy and

reliability. Specifically, the bibliographer

was interested in cognitive interviews

and field tests, or data on the properties

of the questions generated through other

means. This work revealed a paucity of

research on existing instruments. We

were only able to obtain a report on

cognitive work for the Census 2000

questions, and that report indicated that

only four of the six questions were

tested. The report also indicated that,

where problems were found and

corrected, the corrected versions were

not tested before they were fielded in

the dress rehearsal. The Work Group did

receive some promising data from the

World Health Organization (WHO) on

the psychometric properties of its

Disability Assessment Schedule (DAS)

questions. Also, the definition of

disability underlying the WHO questions

is consistent with that given in the

Executive order.

Originally, the Work Group and

BLS planned to identify question sets

that were available, and build on

whatever existing research had been

conducted to the point where the

questions would have known reliability

and accuracy characteristics. Once

satisfied with the characteristics, the

questions could be placed in the CPS.

Unfortunately, our research indicated the

effort would have to start largely from

scratch since there appeared to be

serious problems with the questions that

were currently available.

A good case in point is what

happened with the Census 2000

questions from the dress rehearsal,

administered in California and South

Carolina. The last two questions inquire

if, because of a physical, mental, or

emotional condition, the respondent has

any difficulty: (1) Going outside to shop

or go to a doctor’s office, or (2)

Working at a job or business. The data

show that people who responded ‘‘yes’’

to both of these questions were

employed at a higher rate than those

who reported having no difficulty. Such

a counterintuitive finding indicated the

questions failed to do what they were

designed to do—identify the disability

population.

This caused the Work Group and

BLS to reconsider its research plan. The

original plan called for testing existing

question sets. What was the point of

testing question sets that did not work?

Besides, any disability questions we

selected for further testing would have

to be modified to fit the context of the

test and the vehicle’s essential survey

conditions, and eventually, the CPS.

Therefore, the research plan evolved to

testing individual questions themselves,

rather than question sets. This greatly

enhanced the flexibility of the research

effort in two ways. First, it increased the

number and types of questions BLS

could test, including modifications to

wording for a given question. Second,

based on the data, a new question set

that had the desirable properties could

be constructed from the test questions.

The reformulated research plan requires

the Work Group to identify a set of

questions, conduct cognitive tests, and

to test the questions in an existing

survey instrument.

The effort to identify disability

questions focused on surveys such as

the SIPP, NHIS, the National

Organization for Disability’s NOD/

Harris Poll, and others. The object was

to identify the minimum set of questions

that were responsible for classifying the

bulk of the people the survey identified

as having a disability. For example, the

NOD/Harris Poll had a question ‘‘Do

you consider yourself to have a

disability?’’ This question was

responsible for capturing 87 percent of

the individuals that all six of its

classification questions identified as

having a disability. The SIPP required

more than eight questions to identify a
Page 6 [ Series 4, No. 32

majority of its disability population, and

the NHIS had about 80 classification

questions to do its job. Both these sets

were determined to be too large to be

included in the CPS, and thus were

excluded from the proposed test.

The importance of Census 2000 in

the statistical system led BLS to include

them in the test after modifying and

testing them as questions, but again, not

as a set. It might have been that in a

self-administered format as that used in

the census, the respondent did not keep

the connection with the root of the

question—they answered as though they

thought the last question was ‘‘Do you

work at a job or business’’ rather than

‘‘do you have any difficulty working at

a job or business.’’ That hypothesis

would be consistent with the high

employment rate of people who

ostensibly were reporting difficulty

working because of a physical or mental

condition. A face-to-face or telephone

interview with a trained interviewer

might correct this problem.

The data reduction method

described above delivered about 20

questions for testing. The next two

phases of the research plan are to

conduct cognitive tests of the questions

and to place the questions in an existing

survey.

Twenty cognitive interviews are

planned for the questions. The

interviews are designed to achieve two

broad goals. The first is to see what and

how respondents think about the

question content—if the questions

include good examples of activities one

might be limited in, if respondents

would identify people who they think

have disabilities, and if the questions

contain language that makes them

difficult to understand or otherwise

respond to. The second goal is to learn

what respondents think of when they

hear and use certain terms that are key

to the questions. These terms include

disability, impairment, conditions, and

health problems. The cognitive

interviews will be conducted in three

waves between October 23 and

November 3, 2000. After the first and

second wave, researchers will have the

opportunity to modify the language and

submit the modified question to the next

round of cognitive interviews.

Hopefully, by the last round, the

questions will be a close-to-finished

product.

The next phase is to place the

finished product in the National

Comorbidity Survey (NCS), which is in

the field between February 2001 and

October 2001. (One-third of the data

will be available in May.) The NCS has

several characteristics that make it

particularly attractive as a test vehicle. It

is an exhaustive instrument for

determining the prevalence of mental

disorders. These disorders are among the

most difficult to identify in a survey. It

also has a number of measures for

physical disabilities, such as the Global

Assessment Schedule. The interviews in

the NCS are face to face, but 10 percent

of the households will be reinterviewed

to determine the relationship between

self- and proxy responses.

Six of the candidate questions come

from the WHO DAS II; and as it

happens, the NCS has 18 questions from

the WHO DAS II, including the 6 that

were selected for further testing. The

NCS is timely as well, and Ron Kessler,

the principal investigator in the NCS,

has loaned his extensive research

experience in this area to the Work

Group effort.

The requirement for accurate and

reliable statistics means the data must

identify the desired population. There is

no purpose to providing data on the

wrong population. As difficult a task as

this has been, many organizations have

supported the ERMM efforts with time

and money. In particular, we can thank

the Presidential Task Force on the

Employment of People with Disabilities

for providing strong and critical

financial and technical support. Other

agencies have provided equally

important and strong technical expertise.

The agencies and individuals involved

have appreciated the need for the

research effort and continue their

support. If it is possible for a scientific

approach to generate accurate and

reliable questions, the process they put

in place will do so.
Series 4, No. 32 [ Page 7

Measures of Disability for the

National Study of Health and

Activity

by Susan Kalasunas, Social Security Administration

For purposes of entitlement to

disabled worker’s benefits under the

Social Security Act, disability is defined

as: the inability to engage in any

substantial gainful activity by reason of

any medically determinable physical or

mental impairment which can be

expected to result in death or which has

lasted or can be expected to last for a

continuous period of not less than 12

months. A person must not only be

unable to do his or her previous work

but cannot, considering age, education,

and work experience, engage in any

other kind of substantial gainful work

which exists in the national economy.

1. Introduction

The National Study of Health and

Activity (NSHA) is a national survey

designed to provide the Social Security

Administration (SSA) with information

critical to making informed decisions

about the future of its programs. It will

collect health, employment, income, and

social/family data on a nationally

representative sample of approximately

5,500 individuals through self-reports,

medical examinations, and medical

records from health care providers.

While NSHA will provide the

greater disability research community

with a better understanding of the

service needs of Americans with

disabilities by providing data on the

relationship between disability and other

aspects of everyday life, it was designed

with a much more focused mission in

mind. The NSHA was initiated in

response to the rapid growth of SSA’s

disability programs in the late 1980s and

early 1990s. During the 5 years from

1989 through 1994, the number of

Social Security Disability Insurance

(SSDI) beneficiaries increased

40 percent (from 2.8 million to almost 4

million) and benefit payments increased

65 percent (from $23 billion to $38

billion). Dramatic trends in eligibility

were also seen for the Supplemental

Security Income (SSI) program during

that time. The number of disabled SSI

recipients rose from 2.1 million in 1989

to 3.2 million in 1994, an increase of

52 percent. In 1994 in response to an

imminent shortfall in the DI Trust Fund,

Congress amended the statutory formula

for allocating FICA tax revenues

between the Old-Age and Survivors

Insurance (OASI) and DI Trust Funds.

While this change proved to be a

remedy in the short term, this situation

highlighted the critical need for a source

to inform SSA of trends and factors

affecting the future of SSA programs—

especially the SSDI Program. That

source will be NSHA.

2. Design

The NSHA sample will be selected

using a multistage, stratified probability

sample design. At the first stage, a

stratified sample of 80 primary sampling

units will be selected with probabilities

Contributions to this paper were made by Robert Weathers, Michael Marge, and Mel Strohminger, Social

Security Administration, and the staff of Westat, Inc., notably Jim Bethel and Graham Kalton.

proportional to size. Within the selected

units, households with persons 18 to 69

years of age will be subsampled at rates

designed to yield a nationally

representative sample of households.

Households will be selected using area

probability sampling methods. Group

homes will be mainly sampled from lists

of group homes compiled for selected

sampling units.

The second stage involves screening

approximately 100,000 households

representing the civilian

noninstitutionalized population of the

United States. Data from this initial

screener will be used to classify the

respondents into four study groups:

persons who receive disability benefits

from Social Security, nonbeneficiaries

likely to be severely disabled,

nonbeneficiaries who are less severely

disabled, and nonimpaired/slightly

impaired nonbeneficiaries. Following the

initial screener, a subsample of screener

respondents, 10,000 individuals between

the ages of 18 and 69, will be selected

to take a comprehensive survey with

questions on employment, education,

health insurance, income, and program

participation.

What makes the NSHA different

from most other surveys is that it will

not rely solely on self-reports but will

provide an opportunity to make direct

clinical observations about study

participants. From the 10,000

individuals who take the comprehensive

survey, 5,500 will be chosen to

complete medical examinations. The

examinations will take place in a mobile

examination center (MEC) specifically

constructed for the NSHA and given by

an NSHA medical team consisting of a

physician, a nurse practitioner, a

psychiatric social worker, and a

radiological technician. For those who

cannot or will not go to the MEC for

the examination, at-home examinations

will be arranged with a home exam

team. The examination has been

designed to obtain as much information

as possible with the use of a basic

examination. In addition, a more

detailed examination of a specific

system will be completed, if necessary,

to address issues identified in the

medical history and from the basic

exam. The purpose of the exam is to
Page 8 [ Series 4, No. 32

review reported signs, symptoms, and

medical conditions and provide medical

observations, tests, and procedures that

will document the self-reports of the

participants and present some evidence

of severity. In addition, participants will

be asked to sign consent forms that will

allow NSHA to collect 3 years’ worth of

medical records from all of their health

care providers.

The State Disability Determination

Services (DDS) examiners make the

decision on whether or not an individual

meets the disability criteria for the

Social Security disability programs.

Since NSHA’s main purpose is to

capture who would or would not qualify

for disability benefits under SSA’s

disability programs, the DDS examiners

will be making the determination of

disability for NSHA. Information from

the comprehensive survey, the results of

the NSHA medical examination and the

medical records from the participant’s

health care providers will be compiled

into case folders modeled on those

developed by the DDS for disability

program purposes. The DDS then will

make disability determinations based on

the Social Security definition in a

process that simulates the actual DDS

determination process as closely as

possible in a research context.

3. The Research

Questions

SSA identified four questions with

answers critical to the future of the

Social Security disability programs:

1. What is the number of people

whom, but for work or other

reasons, are severely enough

impaired to be considered disabled

for Social Security purposes?

The primary purpose of NSHA is to

examine the population of ‘‘eligible

nonparticipants.’’ Until the size of

this pool of potential eligibles is

known, SSA cannot understand the

magnitude of possible program

growth with which the agency must

be prepared to deal. The

information that is currently

available is based predominantly on

survey data with self-reported health

measures. There is no information

available in which the Social

Security definition of disability has

been applied through the current

decision process. What is available

indicates that at any given time,

there are a substantial number of

people not on the disability rolls

whose impairments are severe

enough to meet the SSA definition

of disability. If other relevant

factors, such as a turndown in the

economy or changes in the structure

of the labor force, induce these

people to apply, the number of

applications and awards may surge.

The NSHA will provide, through its

own, independent medical

examination and through application

of the SSA disability definition by

SSA disability examiners, the

numbers and types of people who,

but for nonmedical factors, could be

eligible for SSA benefits. The key

to the future of SSA disability

programs lies with those who are

severely impaired enough to be

eligible for benefits if they lost their

jobs or if some other change in

their lives occurred. Understanding

those individuals will allow SSA to

understand the magnitude of and to

be prepared to deal with potential

program growth. The U.S. economy

has been in a sustained period of

expansion, and unemployment is at

an all-time low. However, should

there be a downturn in the economy

or changes in the structure of the

labor force, the number of

applications and awards may very

well surge.

In order to determine this pool of

potential eligibles, NSHA will

combine self-reported information

from the comprehensive survey,

information from the NSHA

medical examination, and medical

records from the immediately

preceding 3 years to create

simulated SSA disability folders for

each study subject targeted for the

medical evaluation (∼ 5,500

people). DDS examiners then will

be asked to make disability

decisions based on the medical

information in the simulated folders.

Those subjects whom the examiners

find disabled (disregarding work or

other nonmedical reasons for

disqualification) for Social Security

benefits are those who will be

considered disabled for Social

Security purposes. These are the

individuals who make up the pool

of those who are potentially

eligible, currently qualified to

receive benefits if they lost their

jobs, or if some other reason

necessitated an application for SSA

disability benefits.

Just as important as the number of

people currently eligible for Social

Security benefits is the number who

are ‘‘in the pipeline,’’ who might be

expected to qualify for disability

benefits in the near future due to a

progressive condition. These are the

people on the cusp of a severe

disability who, because they have a

progressive degenerative disease or

for other reasons, will be eligible

for benefits in the foreseeable

future. NSHA will estimate the

number of these borderline cases by

using a prognosis made by the

MEC physician, together with an

actuarial analysis of the subject’s

health information. The medical

examination also will be used as

background for the assessment of

the residual functional capacity

(RFC). Measures of functional

capacity are assessed in the

interview section of NSHA prior to

being selected to participate in the

medical examination. If an

individual does not meet the level

of disability as defined by the

listings for any given condition, the

medical information from the

examination will be an important

consideration in determining the

RFC and an important consideration

in the process of determining

disability classification.

One of the provisions of the

Ticket-to-Work and Work Incentives

Improvement Act of 1999 is an

expanded availability of health care

services. The law gave States the

option to provide Medicaid

coverage to more people with
Series 4, No. 32 [ Page 9

disabilities who work, created a

new Medicaid buy-in demonstration

project to provide medical

assistance to workers with

impairments who are not yet too

disabled to work, and extended

Medicare coverage for people with

disabilities who work. All of these

initiatives will be supported by

information from NSHA.

2. What enables disabled persons to

remain in the workforce?

Part of the growth in SSA disability

programs in the late 1980s through

the early 1990s occurred because

few disabled workers left the

programs due to resumption of

work activity. For fiscal year 1996,

only 6,024 workers referred by SSA

were rehabilitated by State

vocational rehabilitation agencies.

This is a major concern, since a

1997 report by the U.S. General

Accounting Office shows that the

lifetime savings for each 1 percent

of the DI and SSI beneficiaries

leaving the rolls is $3 billion.

To increase the number of disabled

individuals who rejoin the labor

force, improved return-to-work

strategies must be developed. On

December 17, 1999, the President

signed the Ticket-to-Work and Work

Incentives Improvement Act of

1999 (PL 106-170), designed to

assure that more Americans with

disabilities have the opportunity to

participate in the workforce and

lessen their dependence on public

benefits. A major goal of SSA is to

develop ways to encourage people

with disabilities to remain in the

labor force rather than apply for

benefits, and to provide the supports

necessary for disability beneficiaries

to leave the rolls by returning to

work. One objective of the

Ticket-to-Work and Work Incentives

Improvement Act of 1999 was to

ensure that more Americans with

disabilities have the opportunity to

participate in the workforce and

lessen their dependence on public

benefits. The NSHA plays an

important role with respect to

SSA’s Ticket-to-Work initiatives.

While the current definition of

disability is intended to distinguish

that part of the population that is

too impaired to work, we know that

some severely impaired persons

nonetheless continue to work

despite their impairment. The

NSHA will allow SSA to compare

persons with similar impairments

who are in and out of the labor

force, in order to identify the

crucial factors that enable some

disabled individuals to work while

others with the same impairment do

not. An understanding of the

accommodations, social supports,

and other variables that influence

this activity will support

employment initiatives designed to

encourage beneficiaries to return to

work.

Most notably, one of the provisions

of the Ticket-to-Work legislation,

the $1-for-$2 Project, will make

NSHA data the basis of its analysis

of the induced entry effect of the

$1-for-$2 benefit offset. The serious

design issues and measurement

problems inherent in undertaking a

demonstration project to measure

the induced entry effect of altering

program provisions to include a

benefit offset has led the $1-for-$2

Project to consider an alternative to

attempts at direct measurement. The

alternative would use data on

potential eligibility from NSHA to

develop estimates of possible

induced entry. In order to make

estimates of induced entry and the

associated program costs, NSHA

will provide the information that

will help the $1-for-$2 evaluation

answer the following critical

questions: (1) Who is eligible? (2)

Who will be better off under the

new program and induced to apply?

(3) When will they apply? And, (4)

how much will they work while on

the program (i.e., what is the

amount of the reduced benefit)?

NSHA data also will permit

comparisons of individuals with

similar impairments who are in and

out of the workforce, and will help

us to understand the crucial factors

that enable some disabled

individuals to remain in the laborforce while others, with the same

impairments, do not work. These

factors include interventions,

accommodations, and social

supports. An analysis of the

responses from the five sections of

the NSHA survey instrument (which

asks questions about activities of

daily living, access to services,

functional limitations, social and

community living, and economic

resources) will provide significant

information about persons who

continue to work and how they do

so. It is anticipated that this is the

NSHA research question that will

be of most interest to general

researchers in the field of disability

and work and will be the focus of

significant independent research in

all disciplines.

3. What are the effects of planned or

possible increases in the retirement

age on the disability program?

In order to lower the cost of the

Social Security retirement program,

and thus safeguard the trust fund,

the majority of 1994–1996 Social

Security Advisory Council members

favored accelerating the legislated

change in the eligibility for full

retirement benefits to age 67, so

that the age of eligibility for full

retirement benefits increases to 67

by the year 2011. After 2011, the

retirement age would continue

rising in line with longevity trends.

NSHA will determine what effect

such a rise in retirement age will

have on the disability program by

estimating the number and

characteristics of people with

disabilities between the ages of 62

and 69 who could receive disability

benefits should retirement benefits

not be available.

4. How can we cost-effectively

monitor future changes in

disability?

National surveys are expensive, yet

in order to make informed decisions

on Federal disability programs and

policies, it is vital that the flow of

information continues beyond the

life of individual studies such as
Page 10 [ Series 4, No. 32

NSHA. Lack of resources and the

realities of changing Federal

priorities make the possibility of

any one permanent longitudinal

study an improbability. If the

Federal Government is to be a

reliable and consistent source of

disability information, it is critical

that Federal agencies work together

to ensure that continuum.

The last national survey by SSA

was conducted 20 years ago. Since

then, SSA has had limited

information on which to base its

policy and program decisions. This

was most apparent in the disability

trust fund crisis of the mid-1990s,

which resulted in emergency

measures by Congress and negative

public perceptions of SSA’s

program management abilities. In

order to avoid such situations in the

future, SSA needs a better source of

disability information.

SSA cannot afford to run a

full-fledged NSHA every few years,

but a reasonable alternative would

be to have an inexpensive tracking

system, which could monitor

changes in the prevalence and

incidence of disability in the

population. During the NSHA

analysis, we will identify those

survey items that provide the most

reliable responses to our key

questions. We will then be able to

include those items in other

disability studies and collect limited

but vital and accurate information

on an on-going basis, which will

enable us to detect change in the

prevalence and incidence of

disability in the U.S. working-age

population.

4. Integrating

Comparable Measures

of Disability Federal

Surveys

As NSHA’s fourth research

question illustrates, it is sometimes

possible and desirable to integrate

comparable measures of disability

in Federal surveys. NSHA uses

survey questions from a variety of

sources, including the census, the

National Health Interview Survey,

and the Occupational Information

Network, and NSHA data will be

used for analysis beyond that

necessary for Social Security

program administration. An obstacle

to comparability are the diverse

number of definitions of disability

used by various Federal agencies.

For example, SSA’s definition is

based on work and the effects of

disability on an individual’s

capacity to work. Although this

definition constitutes a difference

between SSA and the major foci of

other Federal agencies, employment

and the effects of disability on

employability are of definite

concern to the Departments of

Labor, Education, Health and

Human Services, and the Veterans

Administration. The challenge to

create effective ways to crosswalk

between the surveys specifically

designed for various agencies is a

considerable one but should be

pursued expeditiously. The major

question about this endeavor is

whether we can attain a meaningful

and efficient crosswalk between

survey databases while at the same

time meet the specific program

needs of each Federal program.

The primary purpose of NSHA is to

provide the information necessary to

make the critical decisions about the

future of SSA disability programs,

information that is not available

anywhere else. Who would apply

and receive benefits if the economy

changes? Who will be applying for

benefits next year, and the

following year, and the following

year, and why? What will it take to

get people with disabilities into the

workforce? Through NSHA, SSA

will find some answers to these

important questions.

The NSHA also will provide

information necessary to implement

more immediate, legislatively

mandated Social Security

provisions, such as the Ticketto-Work and Work Incentives

Improvement Act. This includes the

$1-for-$2 Demonstration Project,

the initiative to expand availability

of health care services through

Medicaid and Medicare, the Work

Incentives Advisory Panel, and the

Work Incentives Outreach Program.

The researchers of SSA’s Disability

Research Institute (DRI) will also

use the results of NSHA. The

mission of the DRI is to plan and

conduct a broad range of research

that will facilitate development of

disability policy information to

assist policymakers and the public

in understanding disability issues as

they relate to programs under the

Social Security Act and people with

disabilities. The NSHA will provide

much of the raw data which will

highlight needs for focused

research.

Beyond this primary goal to provide

data to inform Social Security

disability policy, however, NSHA

also will provide an extensive

database for disability researchers.

The disability research community

currently has no primary data

source on which to base its

research. The National Health

Interview Survey Supplement on

Disability, conducted from 1994 to

1995 by the National Center for

Health Statistics, was the last

national disability survey and its

5-year-old data are now dated. The

NSHA will fill that gap and serve

as the definitive source for

information on the disabled

population of the United States. It

will also provide the foundation for

disability research for years to

come.

While such an effort would be a

challenge, attaining some degree of

comparability in measures of

disability in Federal surveys that

examine the needs, services, and

outcomes of programs for people

with disabilities would be a

valuable endeavor. The database

derived from such measures would

provide a comprehensive repository

of data, helping to develop a

consistent definition of disability
Series

4, No. 32[ Page11

and the variables associated with it.

This database, being national in

scope, would provide researchers

through the world with the means to

developa multidimensional image

of disability.

Bibliography

Social Security Administration,

Annual Statistical Supplement to the

Social Security Bulletin, 1999

(Washington, DC: Government Printing

Office, 1999).

Social Security Administration,

Social Security Handbook, Section 507

(Washington, DC: Government Printing

Office, 1997).
Page 12 [ Series 4, No. 32

Integrating Comparable

Measures of Disability in

Federal Surveys: The National

Center for Health Statistics

by Gerry E. Hendershot, Ph.D., National Center for Health Statistics

I. Introduction: disability measures in Federal surveys.

Elements of a The new paradigm of disability—

Efforts to integrate disability measures

Program for must be consistent with the new

paradigm of disability that is now Integrating Disability emerging. In the paradigm of disability

Measures that dominated discussion until recently,

disability was understood to be like

disease, a deficit in the individual

This session is a milestone of sorts. person that should be addressed by

Those of us in the disability statistics medical interventions. In the new

community have long recognized and paradigm, disability is understood to be

worked toward the integration of like discrimination, a deficit in

disability measures. The Interagency person-community relationships that

Subcommittee on Disability Statistics, should addressed by social interventions.

for instance, has been meeting monthly Under the old paradigm, the goal was to

for 25 years. That any Government prevent, cure, or ameliorate disability. committee should last so long is a Under the new paradigm, the goal is to

bureaucratic miracle of no small facilitate the full participation of persons

magnitude. It is especially miraculous in with disability. Existing survey measures

the case of this committee, which only of disability were developed under the

recently began to receive some paid old paradigm, so the paradigm shift has

staff support. It has survived on the major implications for integrating

determination and dedication of its disability measures. This is recognized

members, with little recognition from in the long-range plan of the National

the larger statistical community. In this Institute for Disability and

session, however, we pass a milestone, Rehabilitation Research, which says:

because the larger Federal statistical

The new paradigm has significant community is taking note of an

important issue in disability statistics— implications for NIDRR’s research

the integration of survey measures of agenda during the next decade.

disability. A milestone, however, does Examples include...new

not mark the end of the journey, nor approaches for measuring and

does one session yield integrated counting disability, including

disability survey measures. To achieve changes in the methods for

that requires, on a larger scale, the same conducting demographic studies and

determination and dedication national surveys to reflect new

demonstrated by the Interagency definitions or concepts....

Committee on Disability Statistics. To A common disability nomenclature— sustain the effort, a plan or program is The language used to discuss disability

required. Toward that end, I would like has been various and variable. One

to suggest some elements that should be person’s ‘‘impairment’’ is another

included in a program for integrating person’s ‘‘disability,’’ and yet another

person’s ‘‘functional loss.’’ Terms that

were once respectable are now

forbidden, such as ‘‘handicap.’’ In the

U.S. it is considered offensive to say

‘‘disabled person,’’ but in the U.K., it is

de rigueur. The resulting Babel has

hindered disability research, including

integration of survey measures of

disability.

Fortunately, there is a developing

consensus on some nomenclature, best

captured in the new version of the

International Classification of

Impairments, Disabilities, and Health

(ICIDH-2) (1). The classification

recognizes three constructs: body

functions and structure, personal

activity, and societal participation. The

construct labels are value neutral, but

their negative aspects are labeled,

respectively, impairments, activity

limitations, and participation restrictions.

The ICIDH-2 framework also includes a

list of environmental factors that

facilitate or hinder participation, activity,

and function. The ICIDH-2

nomenclature is consistent with the new

paradigm and is accompanied by a

detailed classification system for the

three dimensions of disability. Its early

adoption as a standard would facilitate

integration of survey measures.

An international outlook—The

ICIDH-2 is only one example of

international efforts to reconceptualize

and harmonize disability measures.

Others include the work of the European

Health Expectancy Network (EuroREVES), which has assembled and

examined the health and disability

questions from many European surveys

and made recommendations for standard

questions. Also relevant is WHO’s

development of survey questions on

disability that are consistent with

ICIDH-2, some of which it proposes be

included in standard national health

status surveys. Finally, the United

Nations Statistical Division is preparing

a manual on disability surveys and

censuses that recommends disability

questions. U.S. efforts at integrating

survey measurement of disability should

be at least aware of, and preferably

consistent with, these international

efforts.
Series 4, No. 32 [ Page 13

Standards for collecting and reporting

disability data—The promulgation of

official standards for collecting and

reporting data by authoritative

government agencies or professional

associations can be a strong force

toward integration. Witness the effects

of the Office of Management and

Budget’s Directive 15 on collecting and

reporting data on race and ethnicity.

Even when official standards are not

backed up by penalties or incentives,

they help the consensus-building process

move forward. To be effective, of

course, proposals for new standards

must be supported by research findings

and convincing argument. In the field of

disability statistics, the time may be

right for proposing standards that would

require or recommend in all on-going

surveys sponsored by the Government

(1) the routine collection of simple

disability measures, and (2) the adoption

of survey procedures that facilitate

participation in surveys by respondents

with disabilities. With regard to (1), a

substantial step forward was made with

publication of Healthy People 2010 (2)

in January 2000, because it includes as a

national health objective the placement

of disability questions in all statistical

systems that track progress toward the

national health objectives.

An organizational framework—Those

who are interested in working toward

the integration of survey measures in

Federal surveys need an organizational

framework within which to work. That

framework must, of course, be

interdepartmental because many

departments of Government conduct

surveys that include, or should include,

questions on disability. Some elements

of an organizational framework exist,

including the ad hoc Workgroup on

Employment Rates for Persons with

Disabilities of the Presidential Task

Force on Employment of Adults, and

the Interagency Subcommittee on

Disability Statistics of the

Interdepartmental Committee on

Disability Research. Informal links

already exist among interested staff at

many agencies. Those links need to be

extended to other agencies and to be

recognized and supported at higher

levels of management.

Commitment by individual agencies—

Those agencies whose missions include

disability statistics as a major

component have a responsibility to lead

by example in efforts to integrate survey

measures of disability. They can do so

by participating in those efforts, first

with regard to their own surveys and

survey-related activities, and second

with regard to interagency initiatives in

this area. Because the mission of the

National Center for Health Statistics

(NCHS) does include disability statistics

as a major component, it is appropriate

to ask what it is doing to further the

integration of disability survey

measures. This paper is an attempt to

answer that question by first reviewing

disability statistics activities at NCHS

and then presenting an analysis of

disability questions in six NCHS data

systems to identify opportunities for

greater integration of disability statistics.

II. Inventory of

Disability Statistics

Activities at the

National Center for

Health Statistics

The following pages comprise a

selective inventory of disability statistics

activities at the National Center for

Health Statistics (NCHS). Two criteria

were used to select activities for

inclusion. First, the activities selected

for this report are those that bear most

directly on integrating survey measures

of disability, namely, activities that

involve setting standards for disability

survey data and activities that involve

the ongoing or recurring collection of

disability survey data. That omits

activities in data analysis and

dissemination, some of which

demonstrate substantial progress in

interagency cooperation. For instance,

NCHS was a charter member of two

interagency forums, the Federal

Interagency Forum on Aging Statistics

and the Federal Interagency Forum on

Child and Family Statistics, both of

which have recently published annual

reports that highlight disability survey

statistics.

Second, only activities that are

ongoing or recurring were included.

NCHS was launched in 1960 and some

of its data systems began even before

that. Over its long history, NCHS has

made many contributions to the field of

disability statistics. Those activities,

however, are either reported elsewhere

or not relevant to integrating disability

statistics in Federal surveys today.

Similarly, NCHS has plans at various

stages of development for future

activities in disability statistics, some of

which may have important implications

for integrating disability statistics.

The activities selected for inclusion

in the inventory have been arranged in

sections by organizational unit within

NCHS, with each section introduced by

a brief overview of unit functions. This

arrangement of the inventory should

help readers who want to follow-up on

an activity by identifying the staff unit

directly involved in that activity. It also

reflects the decentralized nature of many

disability activities at NCHS. As in

many Federal agencies, activities related

to emerging issues with crosscutting

features sometimes arise in different

parts of the organization and only later

become integrated.

Office of the Center

Director (OCD)

Among the functions of the Office

of the Center Director, the top

management unit in the Center, are (1)

to plan, direct, administer, coordinate

and evaluate the vital, health, and

health-related statistics programs of the

Center; (2) to stimulate basic and

applied research and developmental

activities; and (3) to provide national

and international leadership in vital and

health statistics and epidemiology. In

exercising those functions, the Office

has initiated a program of Centers for

Excellence in Health Statistics.

In 1999, three Centers for

Excellence in Health Statistics were

funded by NCHS for the purpose of

improving data collection systems to

help develop and evaluate prevention

programs. Current projects include
Page 14 [ Series 4, No. 32

addressing statistical issues aimed at (1)

health promotion and disease prevention

in high-risk populations; (2) developing

methodology that can be applied to

issues such as the effects of smoking on

public health and on racial disparities in

health status and outcomes; and (3)

addressing issues central to the field of

survey research—cognition, technology,

and nonresponse. The last issue is being

addressed by the Michigan Center for

Excellence in Health Statistics at the

University of Michigan’s Survey

Research Center. James Lepkowski

(principal investigator) leads the Center

for Excellence, which also includes

Robert Groves, Michael Couper, Nancy

Mathiowetz, and others.

One project of the new Center,

headed by Nancy Mathiowetz, is

studying the effect of questionnaire

context on responses to disability survey

questions. The study was prompted by

the observation that different surveys

often yield different estimates of

disability statistics even when they are

based on similar disability questions.

While many factors may contribute to

such differences, the Michigan

researchers hypothesize that differences

in the context of disability questions,

primarily differences in the questions

that precede the key questions, are an

important cause of differences in

responses. To test and specify that

hypothesis, they have designed a study

in which key disability questions are

asked in different contexts in the same

survey, using a split sample technique.

The test uses a national random-digitdial-telephone survey as its vehicle.

The test of context effects is viewed

by the research team as one of several

survey methodological issues that must

be investigated, such as difference in

data collection mode and self versus

proxy reporting, in the course of

developing valid, reliable, and

standardized disability modules for use

in a wide range of Government surveys.

Cognitive Methods Staff,

Office of Research and

Methodology (ORM)

The Cognitive Methods Staff

conducts basic and applied research on

the cognitive aspects of the survey

response process in order to improve the

efficiency and quality of the Center’s

data systems. It also develops and tests

survey data collection instruments using

cognitive laboratory methods and related

questionnaire evaluation methods and

conducts a program of reimbursable

applied and basic research, technical

assistance, and consultation on cognitive

aspects of survey methods.

In June 1997, the Cognitive

Methods Staff organized the Second

Advanced Research Seminar on the

Cognitive Aspects of Survey

Methodology (CASM II Seminar). The

Seminar was sponsored by the National

Center for Health Statistics and the

National Science Foundation, with

support of several Federal statistical

agencies. About 50 researchers and

survey methodologists representing a

broad range of scientific disciplines

attended the CASM II Seminar. The

Seminar assessed the contributions of

the CASM movement since its inception

at the CASM I Seminar in June 1984

and sketched a roadmap for fostering

interdisciplinary survey methods

research into the 21st century.

Among the topics on the agenda of

the Seminar was the measurement of

disability. A working group on that topic

submitted a report identifying several

areas for future cognitive research on

disability surveys: the wording of

disability questions, the effects of the

survey context on responses to disability

questions, differences in answers given

by self- and proxy respondents, and

mode of data collection (such telephone,

mail, face-to-face). Part of this program

of research is being realized at the

Michigan Center for Excellence in

Health Statistics described in the

preceding section.

The Cognitive Methods Staff

continues its interest in disability

surveys. It has conducted laboratory

research on administering disability

questions to deaf respondents by means

of a Telephone Device for the Deaf

(TDD) and on the effects of variations

in question wording on reports of vision

impairments by persons with vision

impairments. It has also performed

cognitive testing on disability questions

developed by CDC for use in the

Behavioral Risk Factors Surveillance

System.

Office of Analysis,

Epidemiology, and Health

Promotion (OAEHP)

OAEHP has responsibility for a

wide range of activities that are perhaps

best characterized collectively as

analysis of health data from multiple

data systems. Each of the Center’s main

data production divisions—Vital

Statistics, Health Interview Statistics,

Health Care Statistics, and Health

Examination Statistics—operates one or

a few data collection systems and

analyzes and disseminates data from

those systems. In contrast, OAEHP

typically uses data from many data

systems operated by NCHS and other

agencies to analyze and disseminate data

on selected topics or for selected

purposes.

Some OAEHP activities relate to

ongoing or recurring data reports, such

as the annual report on Health, United

States and the periodic tracking reports

on the National Health Objectives, now

Healthy People 2010. Other of its

activities are more ad hoc and topically

focused, but involve the linking of data

across agencies, such as the

Longitudinal Study of Aging. This

report focuses on two OAEHP projects

that have special importance to the

integration of survey measures of

disability: Healthy People 2010 and the

Longitudinal Study of Aging.

Healthy People 2010—In 1980 and

1990 the Department of Health and

Human Services (DHHS) published

health promotion and disease prevention

objectives for the Nation (Healthy

People 1990 and Healthy People 2000).

The objectives were developed in

consensus processes involving hundreds

of organizations and individuals in the

Government and private sectors all

across the country. In January 2000,

DHHS launched the third in this series,

Healthy People 2010, a comprehensive,

nationwide health promotion and disease

prevention agenda. Healthy People 2010

contains nearly 500 specific objectives

designed to serve as a road map for
Series 4, No. 32 [ Page 15

improving the health of all people in the

United States during the first decade of

the 21st century.

Two overarching goals—increase

quality and years of healthy life and

eliminate health disparities—served as a

guide for developing objectives that will

actually measure progress. The

objectives are organized in 28 focus

areas, each representing an important

public health area. Each objective has a

statistical target for improvements to be

achieved by the year 2010. For most

targets, data sources already exist for

measuring baseline levels and tracking

progress. For some objectives, however,

data sources have yet to be developed.

NCHS is responsible for

coordinating the effort to monitor the

Nation’s progress toward the objectives,

using data from many data sources.

National data are gathered from more

than 150 different data sources,

including seven Federal Government

Departments and voluntary and private

organizations. Data are made available

through DATA2010, an interactive

database system accessible through the

NCHS Web site at www.cdc.gov/nchs.

Because these objectives are

national, not solely Federal, their

achievement is dependent in part on the

ability of health agencies at many levels

of Government and on nongovernmental

organizations to assess objective

progress. Therefore, NCHS is preparing

a document entitled Tracking Healthy

People 2010 that will be published in

November 2000 and that includes

technical information on how the data

are derived and the major statistical

issues.

One of the 28 focus areas in

Healthy People 2010 is Disability and

Secondary Conditions, the overall goal

for which is to ‘‘Promote the health of

people with disabilities, prevent

secondary conditions, and eliminate

disparities between people with and

without disabilities in the U.S.

population.’’ Thirteen specific objectives

for 2010 are included in the disability

area, the most important of which, for

purposes of this report, is the first:

Include in the core of all relevant

Healthy People 2010 surveillance

instruments a standardized set of

questions that identify ‘people with

disabilities.’ ’’

In a draft of Tracking Healthy

People 2010, the NCHS document that

specifies measures of objectives, it is

proposed that this objective be measured

by the percent of all relevant

surveillance instruments that have

adopted a standardized set of disability

questions. The baseline estimate of that

measure for 1999 is given as 0 (zero).

In a comment on the proposed measure,

the document reports:

No standardized set of questions

that identify people with disability

currently exists....CDC has

proposed that a standardized set of

questions on disability be

developed. As standard questions

are adopted by the data systems, the

data produced from them will be

incorporated into the Healthy

People 2010 objectives that

specifically identify people with

disabilities. This presents the

opportunity in the future to have a

standard definition of people with

disabilities that can be used across

data systems and geographic levels.

That a major national program such as

Healthy People 2010 should include a

proposal to standardize disability

questions in many of the data systems it

uses to track progress toward scores of

its individual objectives is a major step

toward standardization of disability

measurement in the Federal statistical

system. Another aspect of Healthy

People 2010 that may also be a major

step toward standardization is its

overarching goal of increasing the

quality and years of healthy life of the

American people. Progress toward that

goal is to be measured by one or more

summary measures of population health.

A summary measure of population

health uses one or more measures of

population health and the demographic

composition of the population to create

a composite measure that expresses the

health of the national population (or a

subpopulation) in a single statistic. For

Healthy People 2000 the summary

measure of population health combined

data on mortality, activity limitation, and

self-assessed health (excellent, very

good, good, fair, and poor) and the

demographic composition of the

population.

The World Health Organization is

now promoting use of a summary

measure of population health as an

important component of its

recommended approach to evaluating

health care systems and setting health

care policy. Its recommended summary

measure of population health is

Disability Adjusted Life Expectancy or

DALE. This measure uses data on

mortality rates and disability prevalence

along with valuations of life lived with

a disability to calculate a single statistic

for a national population (or

subpopulation) that expresses its overall

health status.

The DALE is one of a set of

summary measures of population health

that use the ‘‘Sullivan method’’ first

developed by Francis Sullivan at NCHS

in the 1960s. The measures differ in

their conceptual and measurement

approaches to disability and in the

valuations they assign to life lived with

a disability. WHO uses the new version

of its International Classification of

Impairments, Disabilities, and Handicaps

(ICIDH-2) as the conceptual framework

and classification scheme for the

disability component of the DALE.

In fulfilling its responsibility to

track progress toward the Healthy

People 2010 objectives, NCHS has

adopted a pluralistic and methodological

strategy. Rather than select any one of

the several currently available summary

measures of population health, NCHS

will track progress toward the goal of

more healthy years of life using several

such measures, depending on available

data, and evaluate their performance as

tracking tools.

This work may narrow the field of

choice for concepts and measures of

disability. Concepts and measures of

disability that are both feasible for

ongoing data systems and useful in

summary measures of population health

will have an advantage. Given the

attractiveness of summary measures to

health planners, especially to health

economists, this narrowing could have a

powerful effect on the integration of

disability statistics.
Page 16 [ Series 4, No. 32

Longitudinal Studies of Aging—The

Longitudinal Studies of Aging (LSOA)

are a collaborative effort of the National

Center for Health Statistics (NCHS) and

the National Institute on Aging. The

study is conducted by NCHS, and the

U.S. Bureau of the Census collects the

data. Baseline information for the first

LSOA came from the Supplement on

Aging (SOA), a supplement to the 1984

National Health Interview Survey. The

sample for the LSOA came from the

7,527 persons on the SOA who were 70

years of age and over in 1984.

Reinterviews were conducted in 1986,

1988, and 1990 using three methods of

interviewing: computer-assisted

telephone interviewing, telephone

interviews using paper questionnaires,

and mail questionnaires.

The purpose of LSOA II was to

replicate LSOA for elderly persons who

were 10 years younger than the

population represented in LSOA I, and

to determine if certain processes

associated with aging in the LSOA were

the same or different in a later cohort.

Given this purpose LSOA II was

designed to be as similar to the LSOA

as possible, using the same sampling

plan, questionnaires, and field

procedures. Baseline information for

LSOA II came from interviews

conducted at the same time as Phase 2

of the 1994 National Health Interview

Survey on Disability (NHIS-D), which

was in the field from late 1994 to 1996.

The sample for LSOA II came from the

9,447 persons who were 70 years of age

and over at the time of the baseline

interview. The LSOA II sample was

reinterviewed in 1997–98 and

1999–2000 using the same data

collection modes used in the LSOA.

LSOA I and LSOA II collected data

on limitations of the following activities:

seeing, hearing, chewing, walking,

climbing, standing, sitting, stooping/

crouching/kneeling, reaching, grasping,

lifting, bathing, dressing, getting in or

out of bed or chair, getting outside,

preparing meals, shopping, managing

money, using the telephone, doing

housework, getting to places outside

walking distance, managing medication,

driving a car, and using public

transportation.

Activity limitations—For each reported

activity limitation, questions are asked

about the severity of the limitation. For

most reported activity limitations,

questions are asked about the use of

assistive devices and personal assistance

for those activities. Also, for most

reported activity limitations, questions

are asked about the duration of the

limitation. For selected groups of

reported activity limitations (not

limitations in specific activities),

questions are asked about the medical

conditions associated with the

limitations.

Assistive devices—In addition to the

questions about assistive devices asked

in connection with selected reported

activity limitations (mentioned above), a

question is asked about use for any

reason of any of the following devices

in the last 12 months: tracheotomy tube,

respirator, ostomy bag, catheter, inhaler,

nebulizer, hearing aid, crutches, cane,

walker, wheelchair, scooter, and feeding

tube.

Social participation—Questions are

asked about participation in the

following social activities: getting

together with friends, talking with

friends on the telephone, getting

together with relatives, talking on the

phone with relatives who live outside

the household, going to a place of

worship, going out to a movie, sports

event, etc., and going out to eat at a

restaurant. A final question asks about

satisfaction with the overall level of

social participation.

Medical diagnoses—In addition to the

questions about medical diagnoses

associated with activity limitations

already mentioned, questions are asked

about selected medical conditions often

associated with activity limitations, such

as arthritis, asthma, and stroke. For each

reported condition, a question is asked

about whether or not it was diagnosed

by a doctor. No questions are asked

about the possible functional

consequences of the conditions reported.

Office of International

Statistics (OIS)

The Office of International Statistics

(OIS) has an intramural program of

cross-national health statistics research

and represents NCHS in various

international health statistics activities. It

also provides funding, planning, and

administrative support for collaborative

projects on health statistics by staff at

NCHS and researchers in other

countries. One such activity is Disability

International Statistical Tables, or

DISTAB. Initial funding for DISTAB

was provided by the Office of Disability

and Health, National Center for

Environmental Health, Centers for

Disease Control and Prevention, and

OIS has provided additional and

continuing support.

DISTAB has five participating

countries: the U.S., Canada, the

Netherlands, France, and South Africa.

Each of the countries has recently

conducted a national survey on

disability and was able to commit staff

time to the project. The project team

consists of a representative from each of

the surveys, two disability researchers

retained through contractural

arrangements, a specialist in ICIDH-2

coding, and a consultant from the

disability statistics program of the

United Nations Statistical Division. Over

a 12-month period, the project team met

monthly in telephone conference, and

three times face to face, twice in

Washington, DC and once in Geneva,

Switzerland.

The team began with the

specifications for standard statistical

tables on disability recommended by the

United Nations Statistical Division for

reporting census and survey results. The

team identified variables in those tables

that could be constructed from data in at

least three of the five national disability

surveys. Those variables were then

coded to ICIDH-2 categories insofar as

possible. Each survey representative

then specified how data from their

survey could be coded to the ICIDH-2

categories for each variable, noting any

details of the survey questions or

procedures that might affect

international comparability. Each
Series 4, No. 32 [ Page 17

country then produced the tabulations

for the standard tables using data from

their national disability survey. Two

project reports are planned, one focused

on methodological lessons learned from

the attempt to produce internationally

comparable disability tables based on

the UN’s recommended standard tables

and WHO’s recommended classification,

and another focused on substantive

differences in the disability situations of

the five countries.

Data Policy and Standards

Staff

Among other functions, this Staff is

the organizational home of the World

Health Organization Collaborating

Center for the Classification of Diseases

in North America (or NACC, for North

American Collaborating Center), and the

Director of the Staff is also the Head of

the NACC. The Head of the NACC is

the focal point and coordinator of U.S.

Government activities related to the

International Classification of Diseases

(ICD) and the International

Classification of Impairments,

Disabilities, and Handicaps (ICIDH),

and maintains liaison with the World

Health Organization (WHO).

The ICIDH is the only official,

comprehensive, and worldwide system

for classifying disabilities for statistical

and other purposes. It was first

published by WHO in 1980 ‘‘for trial

purposes.’’ In 1993 the phrase ‘‘for trial

purposes’’ was discontinued, and WHO

announced that a revision of the

classification would be undertaken to

reflect changes in the worldwide

disability situation and lessons learned

from trial uses. Since then many WHO

Collaborating Centers and special

International Task Forces have

participated in developing and testing

the revised classification. WHO staff

plans to present the revised

classification to the World Health

Assembly, the WHO governing body, in

May 2001 for its approval. If approved,

the ICIDH-2 will become the new

worldwide standard for conceptualizing

and classifying disability.

The current working title of the

draft ICIDH-2 (which could change) is

the International Classification of

Functioning and Disability. The

classification has three major

dimensions, each independent of the

others and each classifying a different

aspect of disability, corresponding to the

body, person, and societal levels of

organization. The body dimension is

Body Function and Structure; the person

dimension is Activity, and the societal

dimension is Participation. Also

included is a classification of

environmental factors that affect

disability, especially at the level of

societal participation. Using the

environmental factors codes to

supplement the Participation codes, it is

possible to succinctly indicate the level

of participation in an aspect of social

life and the environmental factors that

facilitate or hinder that participation.

The individual numbered classes in

each dimension are arranged in logical

hierarchies of blocks and chapters,

making it easy to find relevant classes

and to apply them at different levels of

aggregation. The classification is

available in a long version (3-digit

codes for each class) and a short version

(2-digit codes). Also under development

by WHO are a four-page checklist for

clinical use and two survey

questionnaire modules on the Activity

dimension, a 36-question version and a

12-question version. Western University

of the Health Sciences is developing a

Web-based training tool for ICIDH-2

called CODE IDH-2. WHO maintains a

Web site (www.who.int/icidh) at which

many of these documents can be viewed

and downloaded. The Web site includes

a searchable hyperlink version of the

current ICIDH-2 draft.

The WHO/NCHS Collaborating

Center has taken and continues to take

an active role in these activities. It has

alternated with its Canadian

collaborators, initially Statistics Canada

and then the Canadian Institute for

Health Information, in hosting an annual

meeting on the ICIDH revision in which

several hundred North Americans have

participated. It has sent one or more

representatives to the annual

international conferences on the ICIDH

sponsored by WHO. Through contracts

it has funded the development and

implementation of ICIDH training

modules, first on paper, then on personal

computers, and now on the Web. And it

organized and funded testing of the

current and earlier drafts of the revised

ICIDH-2.

Another function of the Data Policy

and Standards Staff is to provide staff

support to the National Committee on

Vital and Health Statistics (NCVHS).

The NCVHS is an independent

committee of citizen-experts authorized

by law, and appointed by and

responsible to the Secretary of Health

and Human Services. Through public

hearings, commissioned papers, and its

own deliberations, the Committee

studies current issues in health statistics

and advises the Secretary on how to

address them. The Committee has no

paid staff of its own, but staff support is

provided by Federal statistical agencies

and coordinated by the Committee’s

Executive Director, who is the Director

of the Data Policy and Standards Staff.

The NCVHS has taken some

actions pertinent to the subject of this

report. In 1996 the Committee

recognized that:

The identification, definition, and

implementation of standardized data

in the health care and health care

information fields are long overdue.

The increasing use of electronic

data, the evolving managed care

field, and the growing requirement

for performance monitoring and

outcomes research have made it

imperative that all health data

collection activities, where possible,

utilize standardized data elements

and definitions.

The committee therefore recommended

a set of core health data elements.

Among them was functional status,

about which the Committee said:

The functional status of a person is

an increasingly important health

measure that has been shown to be

strongly related to medical care

utilization rates. A number of scales

have been developed that include

both a) self-report measures, such

as the listings of limitations of

Activities of Daily Living (ADL)

and Instrumental Activities of Daily

Living (IADL) and the National
Page 18 [ Series 4, No. 32

Health Interview Survey agespecific summary evaluation of

activity limitations, and b) clinical

assessments, such as the

International Classification of

Impairments, Disabilities and

Handicaps (ICIDH) and the

Resident Assessment Instrument

(RAI) widely used in nursing

homes.

The Committee concluded at that

time that none of the measures it

considered was sufficiently developed to

meet its standards for core health data

elements. They deferred naming a

standard for functional status pending

further research.

In 1999 the Populations

Subcommittee of the NCVHS returned

to the issue of a data standard for

functional status, focusing on the

feasibility and utility of a functional

status item in health administrative

records. After hearing from a number of

experts, the subcommittee decided to

focus its attention on the ICIDH-2

because of the promise it showed as a

standard for functional status data. It

heard from many researchers, providers,

and professional associations, and from

officials of WHO. At this time the

subcommittee is preparing its report.

Division of Vital Statistics

(DVS)

The National Vital Statistics System

is responsible for compiling and

disseminating the Nation’s official vital

statistics. The registration of vital events

(births, deaths, marriages, divorces, and

fetal deaths) is a State function.

Standard forms for the collection of the

data and model procedures for the

uniform registration of the events are

developed and recommended for State

use through cooperative activities of the

States and the National Center for

Health Statistics. Additional programs

related to the National Vital Statistics

System include the Linked Birth and

Infant Death Data Set, National

Maternal and Infant Health Survey,

National Mortality Followback Survey,

the National Survey of Family Growth,

and the National Death Index. Neither

the National Vital Statistics System, the

Linked Birth and Infant Death Data Set,

nor the National Death Index have

information on disability, but the three

national surveys—Maternal and Infant

Health, Mortality Followback, and

Family Growth—have collected

disability data in the past or plan to do

so in the near future.

The 1988 National Maternal and

Infant Health Survey (NMIHS)—The

most recent in the series, was based on

a nationally representative sample of

certificates for births and perinatal

deaths that occurred in 1988. In addition

to information from the certificates, the

survey obtained questionnaire data from

the mothers of the infants, the

physicians who signed the certificates,

and the hospitals named on the

certificates. In 1991 a Longitudinal

Followup survey was conducted for the

1988 sample of women with live births,

and about 8,000 questionnaires were

completed. On the questionnaire

completed by sample mothers were

questions on developmental delays (the

Denver Developmental scale),

behavioral problems, and hearing, sight,

or speech difficulties.

The 1993 National Mortality

Followback Survey (NMFS)—The most

recent in the series, is based on a

sample of 22,957 death certificates that

represent 2,215,000 individuals aged 15

years and over who were residing and

died in the United States in 1993. Dates

were drawn from two independent

sources, the death certificate and a

proxy respondent questionnaire. The

proxy respondent was someone who

knew the deceased, usually the person

who provided the personal information

about the decedent on the death

certificate, often a close relative.

Included in the proxy questionnaire

were questions on impairments of body

function during the last year of

life—understanding, remembering, and

recognizing—and questions on

limitations of activities during the last

year of life: lifting/carrying, climbing,

walking, doing housework, shopping,

going outside the home, preparing

meals, managing money, using a

telephone, getting around inside the

home, walking, getting in or out of a

bed or chair, eating, using the toilet,

bathing, and dressing. For each reported

activity limitation in the last year of life,

a question was asked about the lifetime

duration of that limitation.

The National Survey of Family Growth

(NSFG)—is a periodic survey on factors

related to fertility, such as marriage and

cohabitation, sexual intercourse, fertility

desires, contraception, and reproductive

health. In its first five cycles, the survey

included a nationally representative

sample of women of reproductive age

(15–44 years) living in the community.

In Cycle 6, which will be fielded in

2002, the NSFG will again include a

sample of women of reproductive age,

but it will also include for the first time

a sample of men in the age range most

likely to be the partners of those

women, 15–49 years. The Cycle 6

sample will have an area probability

sample with oversampling of persons

who are African American, Hispanic

American, or aged 15–24 years. The

total sample size will be about 19,000.

It is planned that the survey will be

repeated with the same design in 2005

and 2008.

The version of the Cycle 6

questionnaire current as of this writing

includes for the first time a set of

questions on disability. They are

identical to the questions used in the

long form of the 2000 Census of

Population that was sent to a randomly

selected 15 percent of households. The

person completing the form was asked

to answer Yes or No to six disability

questions about each household member.

The questions covered (1) blindness,

deafness, or severe vision or hearing

impairment; (2) substantial limitations in

basic physical activities, such as

walking, climbing stairs, reaching,

lifting, or carrying; (3) limitations in

learning, remembering, or concentrating;

(4) limitations in dressing, bathing, or

getting around inside the home; (5)

limitations in going outside the home;

and (6) limitations in working at a job.

Items (5) and (6) were only asked about

persons 16 years of age or over. With

slight modifications to accommodate the

face-to-face interview mode of data

collection, the NSFG will ask the same

questions.
Series 4, No. 32 [ Page 19

Division of Health Care

Statistics (DHCS)

To meet changing health statistics

needs, four of the Center’s record-based

surveys were merged and expanded into

one integrated survey of health care

providers called the National Health

Care Survey (NHCS). New data on

alternative health care settings—such as

ambulatory surgical centers, hospital

outpatient departments, emergency

rooms, hospices, and home health

agencies—are being provided through

this system.

The NHCS is comprised of four

National Center for Health Statistics

(NCHS) records-based surveys: The

National Hospital Discharge Survey, the

National Ambulatory Medical Care

Survey, the National Nursing Home

Survey, and the National Health

Provider Inventory (formerly the

National Master Facility Inventory). The

new surveys include the National

Survey of Ambulatory Surgery, the

National Hospital Ambulatory Medical

Care Survey, and the National Home

and Hospice Care Survey. Recordsbased surveys are so named because

they are based on a sample of health or

administrative records, not samples of

persons, households, or organizations.

The National Employer Health

Insurance Survey, which is not records

based, is also a component of the

NHCS.

The two components of the NHCS

that provide substantial disability

information are the National Nursing

Home Survey (NNHS) and the National

Home and Hospice Care Survey

(NHHCS), each of which will be

described here. The two surveys are

fielded in alternate years, the NNHS in

odd numbered years and the NHHCS in

even numbered years. The NNHS was

last conducted in 1999 and the NHHCS

in 2000.

The sample for the National

Nursing Home Survey has a multistage

probability design. The elementary

sampling unit is the residents served in

the facilities, including both current and

recently discharged residents. The first

stage of selection is a probability sample

of the nursing facilities in the universe.

The primary sampling strata of nursing

facilities were defined by bed size and

certification status. Certified facilities

consisted of facilities certified by either

Medicare or Medicaid as a skilled

nursing or intermediate care facility.

Nursing homes were then selected using

systematic sampling with probability

proportional to the number of beds in

the facility. There were two sampling

frames for the within-facility sample: a

list of all current residents who were on

the rolls of the facility, and a list of

residents discharged from care by the

nursing home during a designated month

prior to the interview. Up to six current

residents and six discharged residents

were selected. For each selected

resident, a staff member familiar with

that resident’s care and medical records

was administered a standardized,

fact-to-face interview by a trained

interviewer employed by the U.S.

Bureau of the Census. In 1999 the

sample size was about 1,500 persons.

The questionnaire used for sample

nursing home residents (current and

recently discharged) obtains information

about limitations in the following

activities: seeing, hearing, biting or

chewing, bathing, dressing, eating,

transferring in and out of a bed or chair,

walking, going outside the grounds,

controlling bladder and bowels, care of

personal possessions, managing money,

securing personal items, and using a

telephone.

In addition to the questions about

activity limitations, questions were

asked about assistive devices currently

used by the sample patient, including

glasses, hearing aid, transfer equipment,

wheelchair, cane, walker, crutches, brace

(any type), oxygen, and commode. The

respondent was also asked if the sample

patient used any other assistive devices,

and if so, the names of those devices

were recorded.

The National Home and Hospice Care

Survey (NHHCS)—is a survey of

patients served by home and hospice

care agencies in the United States.

Information is collected about agencies

that provide home and hospice care and

about their current patients and recently

discharged patients. The NHHCS is

based on a probability sample of home

health agencies and hospices. The

survey includes all types of agencies

that provide home health and hospice

care without regard to whether they are

Medicare certified or whether they are

licensed.

The sample for the NHHCS has a

stratified two-stage probability design.

The first stage consists of selecting a

stratified sample of agencies. The

second stage of sample selection,

sampling of six current patients and six

discharges within each agency, was done

by systematic sampling of current

patients and recently discharged patients.

The patients and discharges were

selected from lists constructed for each

agency at the time of the interview.

Discharges that occurred because of

death were included. Data for the

NHHCS are collected through personal

interviews with administrators and staff

and are administered by interviewers

employed by the U.S. Bureau of the

Census. In 2000 the sample size was

about 1,800.

Limitation of activity—The

questionnaire used for sample home and

hospice care patients, both current

patients and discharged patients, obtains

information about limitations in the

following activities: seeing, hearing,

controlling bladder and bowels, bathing,

dressing, eating, transferring in and out

of a bed or chair, walking, using the

toilet room, doing light housework,

managing money, shopping for groceries

or clothes, using a telephone, preparing

meals, and taking medications.

In addition to the questions about

activity limitations, questions were

asked about assistive devices currently

used by the sample patient, including

respiratory therapy equipment,

intravenous therapy equipment, ulcer

prevention equipment, nutrition

equipment, bedside commode, brace

(any type), cane, crutches, glasses,

hearing aid, hospital bed, orthotics,

shower chair, walker, wheel chairmanual, and wheel chair-motorized. The

respondent was also asked if the sample

patient used any other assistive devices,

and if so, the names of those devices

were recorded. The assistive devices

questions were asked about both current

patients and recently discharged patients.
Page 20 [ Series 4, No. 32

Division of Health

Interview Statistics (DHIS)

The National Health Interview

Survey (NHIS) is an annual crosssectional survey of a nationally

representative sample of the civilian,

noninstutionalized population of the

United States. Standardized interviews

are administered face-to-face in sample

households by interviewers who are

recruited, trained, and supervised by the

United States Bureau of the Census. The

NHIS began in 1957 and has been in

the field nearly continuously ever since.

(Interviewing is discontinued for 2

weeks each January for retraining of

interviewers, and in a few years

interviewing was terminated before the

end of the data collection year due to a

shortage of funds.) The NHIS sample is

redesigned every 10 years, most recently

in 1995. The questionnaire has been

redesigned periodically, most recently in

1997. In its current design, each year

the NHIS samples about 41,000 families

with about 107,000 family members.

The NHIS questionnaire is modular,

including a basic module that is

repeated every year and supplements

that are fielded one or more times. The

basic module includes a family module

that obtains some information on all

family members, a sample adult module

that obtains more detailed information

on one randomly selected adult (18

years of age or over) in the family, and

a sample child module that obtains

information on one randomly selected

child or youth (17 years of age and

under). The basic module obtains

information on a wide range of

measures of health status, health care

access and utilization, and health-related

behaviors.

Since its beginning, the NHIS has

collected some data on disability every

year, and periodically it has included

special supplemental questionnaires that

collected additional data on disability. A

major supplement on disability was

fielded in 1994 and 1995, and follow-up

interviews were conducted in 1994–97

with disabled persons identified in

1994–95. In this report the focus will be

on the disability data

currently collected as part of the annual

NHIS basic module.

Limitation of activity—As part of the

family module, the NHIS collects

age-appropriate information for all

family members on limitations in these

activities: play, bathing, dressing, eating,

walking, remembering, getting in and

out of bed or chair, using the toilet,

getting around inside the home, routine

needs (such as household chores, doing

necessary business, shopping, or getting

around for other purposes), and work.

For persons who are not reported to be

limited in any of these activities, a

question is asked about limitation in any

(other) activity, which is not further

specified. For persons reported to have

any limitation in activity, a question is

asked about the medical conditions

causing the limitation and the length of

time since onset of the condition. In the

sample adult and sample child

questionnaires, questions are asked

about two additional activities, hearing

and vision, and the sample child

questionnaire includes a set of questions

that measure limitations in interpersonal

activities of children and youth.

Impairment of body function—The

sample adult questionnaire includes

questions on pain in the joints, neck,

lower back, face or jaw, and severe or

migraine headache.

Assistive devices—The sample adult

questionnaire asks one question about

assistive devices: ‘‘Do you now have

any health problem that requires you to

use special equipment, such as a cane, a

wheelchair, a special bed, or a special

telephone?’’

Division of Health

Examination Statistics

(DHES)

The National Health and Nutrition

Examination Survey (NHANES) has

been designed to collect information

about the health and diet of people in

the United States. NHANES is unique in

that it combines a home interview with

health tests, which are done in a mobile

examination center (MEC). Beginning in

1999, NHANES can be linked to the

National Health Interview Survey

(NHIS) at the primary sampling unit

(PSU) level (i.e., the same counties, but

not necessarily the same individuals, are

in both surveys). NHANES is also

linked to NHIS with regard to

questionnaire content of the household

interview for selected topics, including

disability.

Also in 1999, NHANES became a

continuous survey, that is, it now

collects data from a representative

sample of the U.S. population, newborns

and older, every year. The number of

people interviewed and examined in a

12-month period will be about the same

as in previous NHANES, about 5,000.

Data from different survey years can be

aggregated to achieve greater reliability

for estimates of statistics for small

subpopulations and rare events.

Limitation of activity—NHANES

collects data on disability by personal

interview in sample households and by

tests and examinations in mobile

examination centers (MECs). The

household interview questionnaire asks

about limitations in the activities of

hearing, seeing, remembering, standing,

balancing, stooping/crouching/kneeling,

getting up from a sitting or lying

posture, reaching, grasping, lifting/

carrying, eating, walking, playing,

working, doing household chores,

managing money, going out of the

home, socializing, and relaxing at home.

The MEC includes a test for walking

limitation: the sample person is asked to

walk at a normal pace along a flat,

straight, 20-foot course, and the elapsed

time is recorded as they reach the 8-foot

and 20-foot marks. The 8-foot test for

walking limitations is also done at the

time of the household interview.

Impairment of body function—The

household interview also obtains

information about impairments of body

function. It has a questionnaire module

on pain, and cognitive function is tested

for persons 60 years of age and older

using the Digit Symbol Substitution Test

(DSST), which requires the recording of

symbols corresponding to a series of

standard symbols within a two-minute

period. There are two tests for body

function impairments in the MEC. The
Series 4, No. 32 [ Page 21

first is a test of lower body muscle

function in which the sample person is

asked to lift and extend the right leg

from a sitting position against a steady

pressure exerted by a machine, which

also measures the strength of the leg

muscles. The second is a test of

vestibular balance impairment in which

the sample person is asked to stand for

30 seconds with feet together, arms

folded across the chest, and eyes closed.

Medical diagnoses—A great advantage

of NHANES for the study of disability

is that it incorporates many standard

medical diagnostic tests and

examinations. While medical diagnoses

are in the realm of disease and disorder

and outside the scope of disability, they

are often associated with disability

either as cause or effect. It is very

useful, therefore, to have both medical

diagnostics and disability assessments

for the same study population.

Among the standard medical

diagnostic tests used in NHANES are

two for mental health diagnoses, the

Diagnostic Interview Schedule for

Children (DISC) and the Composite

International Diagnostic Interview

(CIDI), which is for adults. Selected

modules from the DISC are

administered in interviews with children

and youth and their parents, and selected

modules of the CIDI are administered in

interviews with adults. In relation to

hearing impairments and limitations,

two standard diagnostic tests are

performed in the Mobile Examination

Center, pure tone audiometry and

tympanometry. In relation to hearing

impairments and limitations, three

standard diagnostic tests are performed

in the MEC: visual acuity, using an

autorefractor; current eyeglass

prescription, using a Lensmeter; and

near visual acuity, by reading from a

standard card at a measured distance.

III. Coverage and

Comparability of the

National Center for

Health Statistics

Survey Questions for

Selected Disabilities

The United Nations Manual on

Censuses and Population Surveys

recommends that disability data be

reported for selected disabilities, using

the disability nomenclature and

categories of the International

Classification of Impairments,

Disabilities, and Handicaps. The

disability types recommended by the

United Nations for inclusion in reports

are listed below with the corresponding

code ranges of the ICIDH-2, Beta-2,

Short Version, in parentheses.

1. Seeing (b210-b229)

2. Hearing (b230-b249)

3. Speaking (a230-a299)

4. Moving/mobility (a410-a499)

5. Body movements (a310-a399)

6. Gripping/holding (a360)

7. Learning (a110-a199)

8. Behavioral problems (a710–a1729)

9. Personal care (a510-a599)

For each type of disability, the

questions in six NCHS surveys were

examined and assigned to an ICIDH-2

code category. The following surveys

were included: NHIS, NHANES, LSOA,

NNHS, NHHCS, and NMFS. Two other

surveys that have disability data were

not included: the NSFG and the

NMIHS. The NSFG was not included

because the disability questions it used,

the 2000 Census questions, cannot be

coded to the ICIDH because they

confound more than one type of

disability in each question. The NMIHS

was not included because it is 10 years

old, and there are no plans to repeat it.

For each type of disability, a table

was prepared with rows corresponding

to ICIDH-2 code categories and

columns corresponding to the six

surveys. Questions were entered in the

cells corresponding to the column of the

survey in which they are used and the

row of the ICIDH-2 code that applies.

The tables are appendix tables 1–9, with

the table numbers corresponding to the

list of U.N.-recommended disability

types given above.

A summary of the coverage of the

U.N. disability types by the six NCHS

surveys is given in the table below. A

check mark in a cell means that a

survey has at least one question about

that type of disability, although the

questions may differ across surveys and

may not have the same ICIDH-2 code.

According to type of disability, ‘‘Body

movements’’ and ‘‘Personal care’’ are

covered best all six surveys have at least

one question on those types of disability.

‘‘Seeing’’ and ‘‘Hearing’’ are both

covered by six of the seven surveys.

The least well-covered type of disability

is ‘‘Speaking,’’ for which only the NHIS

has a question. According to survey, the

NHIS provides the best coverage, with

questions for all nine of the disability

types. NHANES and LSOA follow

closely with coverage of seven of the

nine disability types. The other three

surveys cover four or five of the nine

disability types.

Brief comments will be made on

each type of disability with respect to

similarities and differences in the

questions asked in the six surveys.

Seeing—Most of the surveys ask first

about trouble seeing and then about

blindness, but the LSOA reverses the

order, asking first about blindness and

then about other difficulty seeing. Most

of the surveys ask about difficulty

seeing even when wearing glasses, but

NHANES omits that qualification. All

of the surveys ask questions that allow

classification into at least three

categories of severity: blind, some

difficulty seeing, and no difficulty

seeing; however, the NHIS and the

LSOA allow classification in only those

categories, whereas the other surveys

allow greater detail in the specification

of severity of seeing limitations. LSOA

does not define blindness, NHIS and

NHANES equate blindness with being

‘‘unable to see at all.’’ NNHS and
Page 22 [ Series 4, No. 32

NHHCS define severely impaired as

‘‘cannot watch TV 8 to 12 feet away,

but can recognize the features of

familiar persons if they are within 2 to 3

feet,’’ and blind as ‘‘[vision] completely

lost.’’

Hearing—NHIS and NHANES ask

about hearing without a hearing aid,

whereas NNHS and NHHCS ask about

hearing with a hearing aid; LSOA does

not mention a hearing aid. The LSOA

asks first about deafness, then about any

other trouble hearing, whereas the other

surveys ask one question about hearing

with deafness being the last of several

degrees of hearing impairment

mentioned. NHIS and NHANES do not

define ‘‘deaf,’’ but the NNHS and

NHHCS define it on a card given to the

respondent as ‘‘can hear only a few

words a person says or loud noises.’’ All

of the surveys except allow for coding

several degrees of hearing limitation, but

the LSOA allows the fewest number of

degrees: deaf, some limitation, and no

limitation.

Speaking—Only the NHIS has

questions on speaking limitations, and

then only for children and youth (17

years of age and under). Two NHIS

questions deal with speaking limitations,

both rather indirectly. The respondent is

asked if the child has had any of a list

of conditions and impairments, read by

the interviewer, that includes ‘‘Stuttering

or stammering.’’ Elsewhere, respondents

are asked if a child or youth is limited

in activities of play, school, or personal

care. If so, the respondent was asked to

name the condition or impairment

causing the limitations, and the

preprinted list of coded response

categories included ‘‘Speech problem.’’

The first question codes unambiguously

to the ICIDH-2 Body Function code

B3300, which specifically names

stuttering and stammering as inclusions.

‘‘Speech problem,’’ however, is less

specific, and in the absence of other

information could be coded to B3300 or

Activity code a230. This illustrates a

sometimes property of the ICIDH-2, the

potential for coding the same

information to two different codes, that

critics would call confusion and

supporters would call flexibility.

Moving/mobility—NHIS, LSOA, and

NMFS have general questions about

walking, which do not specify distance

or surface. They code quite reasonably

to the general ICIDH-2 code for

walking activities. Note that the NHIS

and LSOA questions specify an

environmental factor in framing the

question: ‘‘without any special

equipment.’’ A person who walks

without difficulty using crutches, for

instance, is expected to report a

limitation in walking under the

conditions the question specifies.

NHANES also specifies ‘‘without any

special equipment’’ in asking about

difficulty in walking from one room to

another. The ICIDH-2 code for walking

short distances applies, but notice that it

defines ‘‘short’’ as any distance up to 1

kilometer (0.66 miles). For that reason,

the NHIS and LSOA questions about

difficulty in walking a quarter mile, are

also coded to the ICIDH-2 code for

walking short distances. NHIS,

NHANES, and LSOA use very similar

questions about climbing, each

specifying no use of aids, 10 steps, and

no resting. There are minor differences

in the questions determining the severity

of the limitation. The climbing questions

are unambiguously coded to the

ICIDH-2 activity code for climbing.

Body movements—NHIS, NHANES,

and LSOA have very similar questions

about limitations in standing, which

clearly matches the ICIDH-2 code for

maintaining a standing position. All

three survey questions specify that the

assessment should be made assuming no

personal assistance and no special aids.

LSOA alone has a question about sitting

limitations, which again clearly matches

the ICIDH-2 code for sitting; the

question specifies no special aids, but

does not specify no personal assistance.

Only the NHIS has no question

about getting in or out of bed, but there

are substantial differences in the way

the other surveys ask about this activity

limitation. NHANES and LSOA specify

no personal assistance and no special

aids, but the others do not so specify.

NHANES, LSOA, and NMFS ask about

difficulty in transferring, while NNHS

and NHHCS ask about receiving help to

transfer. The questions fit, with varying

precision, the IDICH-2 Activity code for

changing body position. Getting in and

out of bed or chairs is a relatively

complex activity that combines several

simpler activities that the ICIDH-2

decomposes into changing body position

from sitting, changing body position

from lying, and changing body position

from standing. It must, therefore, be

assigned to the general ICIDH-2 code

for limitations in changing body

position.

Questions about limitations in the

related activities of stooping, bending,

crouching, and kneeling are asked in

NHIS, NHANES, and LSOA. All three

questions specify no personal assistance

and no special aids, and all measure

several levels of severity. All three

limitations can be coded to the ICIDH-2

Activity code for changing body

position from standing.

One survey, NHANES, asks

question about limitations in getting up

from a chair (without personal

assistance or special aids), which can be

coded to the more specific ICIDH-2

Activity code for changing body

position from sitting.

The NHIS alone asks a question

about limitations in moving large

objects, such as furniture. There is no

single ICIDH-2 code to which this

activity can be assigned, because it

combines pushing and pulling with both

the arms and the legs, which the

ICIDH-2 assigns two different codes.

Gripping/holding—NHIS, NHANES,

and LSOA ask nearly identical questions

on grasping and handling small objects,

which fits well to the ICIDH-2 code for

fine hand use.

Learning—The table for this domain

contains a fairly large number of

questions, most of which find

comfortable assignments in the ICIDH-2

code structure, but there is relatively

little comparability between surveys.

The exception is the comparability of

questions in the NHIS and NHANES on

mental retardation, remembering/

confusion, and depression/anxiety/

emotional problems.

Behavioral problems—Only the NMFS

has questions that can be coded to the

ICIDH-2 in this domain. The NHIS
Series

4, No. 32[ Page 23

child questionnaire hasa set of

developmental questions that includes

behavioral items; however, the set of

questions comprisesa scale, and the

individual items are not considered valid

and reliable when used alone.

Personal care—NHANES hasa

question on limitation of eating, and the

other surveys have questions on eating,

dressing, bathing, and toileting. For all

four of these activities, there are

ICIDH-2 codes that match well. The

major difference between the questions

in the six surveys is the circumstance

defining limitations: in NHIS it is

needing help from another person, in

NNHS and NHHCS it is receiving the

help of another person, in LSOA and

NMFS it is difficulty, and in NHANES

it is difficulty when not receiving

personal assistance or using assistive

technology.

Reference

1.World Health Organization.

International Classification of

Impairments, Disabilities, and

Handicaps(ICIDH-1). Geneva,

Switzerland. 1980.
Page 24 [ Series 4, No. 32

Developing the Capability to

Measure Crime Victimization of

People With Disabilities

by Michael R. Rand, U.S. Bureau of Justice Statistics

Background estimates based upon a review of the

existing literature, estimated that people

with developmental disabilities are 4 to

On October 27, 1998, the President 10 times more vulnerable to crime

and Congress presented the Bureau of victimization than people without

Justice Statistics (BJS) with a disabilities (3).

tremendous challenge with the signing That many of these studies that are

of PL105–301, the Crime Victims with cited on this topic were conducted in

Disabilities Awareness Act. Section 5 of other countries, demonstrates the overall

the Act directed the Department of insufficiency of information about the

Justice to include in the National Crime victimization experience of people with

Victimization Survey (NCVS) statistics disabilities in the United States. For

relating to: example, in the Act, Congress cited

the nature of crimes against studies conducted in Canada, Australia,

individuals with developmental and Great Britain. Compared to other

disabilities; and the specific segments of the population, therefore,

characteristics of these crimes. the amount of data that can be brought

to bear on this issue is extremely thin.

This paper reviews the efforts that The Australian study cited in

the Bureau of Justice Statistics has taken P.L.105–301 was a survey administered

to date to implement the Act, and to a sample of people with cognitive

examines a number of the issues and disabilities using a questionnaire

problems that need to be resolved in modified from the Australian Victims of

order to develop a national data Crime survey. This study found that for

collection program that permits accurate violent crimes, the vulnerability of

estimates of crimes affecting people people with disabilities ranged from

with disabilities. about 3 times higher for assault to 13

The legislation was passed because times higher for robbery (4).

of a perceived dearth of national At least one study has found that

statistics relating to the victimization of people with intellectual disabilities are

persons with disabilities. This lack was also subject to repeat victimization,

cited both in the legislation and by often at the hands of care providers or

researchers and advocates in discussing family members. In this study

the issue. More than one advocate in 83 percent of the women in the sample

this area has characterized victims of reported being sexually assaulted in

violence who have developmental their lifetimes; of these nearly half had

disabilities as ‘‘invisible victims’’ (1,2). been sexually assaulted 10 or more

The studies that have been done times (5).

have consistently found that people with One can draw a number of

disabilities are at greater risk of criminal conclusions from an examination of the

victimization than the general population citations of studies examining

(1). One study, that incorporated victimization of people with disabilities,

including developmental disabilities.

First, many of the studies still cited are,

for the most part dated, having been

conducted in the late 1980s or early

1990s. Second, because there are only a

few studies on point, these are cited

repeatedly. Third, no trend data are

available. It is therefore not possible to

determine whether persons with

disabilities have experienced the same

improvements in crime rates as the

general population has through the late

1990s. Fourth, because of small sample

sizes, these studies could not address

such issues as differential vulnerabilities

related to various types or degrees of

disability.

This combination of a few studies

indicating the greater vulnerability of

people with disabilities, combined with

the lack of sufficient data to drive

policy and programmatic decisions and

raise the issue to a greater public

consciousness led in 1998 to the passage

of the Crime Victims with Disabilities

Awareness Act.

The provisions of the Act were very

specific. It did not call upon the

Department of Justice to develop the

means to measure victimization of

people with disabilities using any

appropriate platform. It directed the

Department to use the National Crime

Victimization Survey (cited in the Act as

the ‘‘National Crime Victim’s Survey’’)

to measure the nature and characteristics

of crimes against people with

developmental disabilities, that is a

subset of the population with

disabilities.

The National Crime

Victimization Survey

The National Crime Victimization

Survey (NCVS), conducted annually

since 1972, is the U.S. Department of

Justice’s primary vehicle for measuring

the characteristics of victims of crime,

including violent crime. The NCVS is

conducted at about 50,000 sample

households each 6 months to measure

the occurrence of a set of serious

crimes; specifically the crimes of rape,

robbery, assault, burglary, theft, and

motor vehicle theft. The NCVS provides

information about the victims, and
Series 4, No. 32 [ Page 25

characteristics and consequences of the

crimes sustained during the 6 months

prior to the interview. Because the

sample is drawn to represent the

national population, the survey can

produce national estimates of the

amount and types of crime, as well as

such rates for various demographic

population subgroups.

The survey has two parts: a crime

screener and an incident report. The

screener is administered to every

household member age 12 or older to

determine whether they have been the

victim of a crime measured by the

survey. For any crime identified by the

screener, the incident report is used to

obtain the details about the

victimization. The NCVS incident report

contains a broad range of questions to

obtain information on the characteristics

of victims, incidents, and consequences

of crime victimization.

The NCVS has a number of

procedural and methodological attributes

that may enhance it as a vehicle for

obtaining information about crimes

against people with disabilities. It was

specified by Congress as the vehicle for

this effort because it is the Nation’s

premier source of data on crime

victimization. The NCVS can produce

national estimates of crime

victimization. It is an ongoing survey. It

utilizes a large sample. This sample has

enabled the survey to detect relatively

small changes in crime over time as

well as to detect differences in the

victimization experience of various

subgroups of the American population.

As will be discussed later, while

estimates of persons with developmental

disabilities or disabilities in general have

varied, such persons represent a

relatively small percentage of the

population. Since no comprehensive

national listings of people with

disabilities exists, any estimates based

upon population based surveys require

extremely large samples to obtain

enough cases in order to make reliable

estimates. The challenge of this effort

requires that estimates be developed for

a fraction of the population about a

relatively rare occurrence: crime

victimization.

Conversely, there are a number of

attributes of the NCVS that impose

difficulties in meeting the requirements

of the Crime Victims with Disabilities

Awareness Act. The survey is household

based and was designed to measure the

incidence of crime against the U.S.

civilian noninstitutional population.

Some of the victimization studies that

have been conducted among people with

disabilities indicate that people in

institutions, usually those with the most

profound and severe conditions, are at

an even greater risk of victimization

than people with disabilities who do not

reside in institutions, and that often the

perpetrators are care givers and other

institutional residents. Therefore,

estimates drawn from the NCVS as

currently constituted would exclude the

experiences of a possibly significant

proportion of the population intended to

be covered under the Act.

Additionally, survey interviewing

mode and methods may not be suited

for interviewing people with difficulty

communicating, especially

communicating by telephone. Currently,

about 70 percent of interviewing for the

NCVS is conducted by telephone. Some

people with disabilities that limit their

verbal communication have access to

technology which enhances their ability

to communicate, but many do not.

Under current procedures, NCVS

interviewers are permitted to obtain

proxy interviews in a very limited set of

circumstances. One circumstance under

which proxy interviews are allowed is if

the respondent is physically or mentally

incapable of responding. The restrictions

upon proxy interviews were made so

stringent in the recognition that others

may not know about the victimization

experiences of the respondent, and

because the person providing the

information for the respondent may, in

fact, be a perpetrator of abuse or

violence.

At the national level, for the

population as a whole, the effects upon

the estimates caused by obtaining proxy

responses for persons with severe

disabilities is probably small. However,

when measuring victimization of people

with disabilities, the use of proxies

becomes much more problematic. To

evaluate the types of disabilities for

which interviewers accepted proxy

interviews, the Census Bureau

conducted a special study in July

through December 1999. For this period,

interviewers recorded the underlying

condition for respondents for whom

proxy interviews were obtained. Across

the 6-month period, about 1,000 such

proxy interviews were conducted;

accounting for about 1 percent of all

NCVS interviews. The most prevalent

types of condition for which proxy

interviews were accepted were cognitive

disabilities and hearing impairments.

The issues related to proxy

interviews are intermeshed with those

pertaining to interviewing

methodologies. NCVS interviewers are

trained to ask questions as worded and

to not deviate from the script. When

respondents do not understand a

question or provide insufficient

information in response to a question,

interviewers are instructed to develop

probes or rephrased questions in

carefully constrained ways in order to

avoid biasing the responses. Such

interviewing methodology may be

inadequate to communicate with some

people with disabilities affecting their

ability to communicate. For example,

research conducted by the ARC,

formerly the Association of Retarded

Citizens, found that some people with

cognitive disabilities were better able to

provide information by drawing pictures

than by conventional interviewing

methods. If, as studies indicate, people

with more profound disabilities are more

vulnerable to crime, these are the people

for whom the current procedures are

least adequate.

Defining Disability

BJS staff began efforts to meet the

mandates of the Crime Victims with

Developmental Disabilities Awareness

Act by creating a strategic plan. This

plan set out a number of key issues that

required decisions and laid out a plan of

attack. The issues identified were:

+ The definition of disability

+ How to operationalize the definition

+ Whether to administer the questions

to all respondents or only those who

report a victimization

+ Whether there exist alternative

strategies to meet the mandates of
Page 26 [ Series 4, No. 32

the Act

+ What methodological issues needed

to be addressed

The first two of these are of most

immediate importance, and in many

ways the most problematic. The

legislation specified that the NCVS

should measure victimization of persons

not with any disability, but with

‘‘developmental disabilities’’ as defined

by 42 U.S. Code 6001, which reads:

The term developmental disability

means a severe, chronic disability

of an individual 5 years of age or

older that: is attributable to a mental

or physical impairment or

combination of mental and physical

impairments; is manifested before

the individual attains age 22; is

likely to continue indefinitely;

results in substantial functional

limitations in three or more major

life activities (self-care, receptive

and expressive language, learning,

mobility, self-direction, capacity for

independent living, and economic

self-sufficiency); reflects the

individual’s need for a combination

and sequence of special,

interdisciplinary, or generic services,

supports or other assistance that is

of lifelong or extended duration and

is individually planned and

coordinated, except that such term

when applied to infants and young

children means individuals from

birth to age 5, inclusive, who have

substantial developmental delay or

specific congenital or acquired

conditions with a high probability

of resulting in developmental

disabilities if services are not

provided.

One of the difficulties in

operationalizing this definition is that it

contains at least one element that is

highly subjective. Developmental

disability is defined by the presence of

substantial functional limitations in

three or more areas of major life

activity. Yet the definition does not

define what is meant by ‘‘substantial.’’

Therefore, there can be a great deal of

subjectivity in the determination of

whether an individual has a

developmental disability.

Another difficulty is that the

definition is based upon the presence of

a number of functional limitations. This

adds an additional layer of subjectivity:

What constitutes, for example, a

functional limitation in mobility? Who

determines this, an observer, a

physician, or the respondent?

One way to address these

difficulties is to ask a large number of

questions, addressing different aspects of

disability, and triangulating the

responses to achieve an operational

definition. This approach is used by the

National Health Interview Survey. A

Disability Supplement (NHIS-DS),

which was administered for a 2-year

period in 1994–95 utilized a multistage

process to identify individuals with

developmental disabilities. The process

involved creating a set of questions to

address each of the seven areas of

functional limitation in the Federal

definition.

Unfortunately, this strategy

involving a large number of questions is

not possible for incorporation into the

NCVS. One constraint in creating a set

of disability questions for the NCVS is

respondent burden. Because the main

purpose of the NCVS is to measure

crime victimization, it is not possible to

add a long series of questions on

disability. The set of disability questions

added cannot jeopardize the overall

survey goals of measuring crime

victimization. Any set of questions

designed to obtain information about

disability must, therefore, not add

substantially to the respondent burdens

already imposed by the survey, or

reduce respondent participation.

Other issues related to definition of

disability and the operationalization of

the definition that BJS had to confront

were:

+ Should the survey identify all

disabilities or restrict the focus to

developmental disabilities?

+ Is it sufficient to determine whether

people are disabled, or must specific

types of disabilities be identified?

+ If specific types of disabilities must

be identified, which specific types?

+ Is it necessary to identify in some

way degrees of severity of

disability?

In resolving these issues, BJS has

made a decision to be as comprehensive

as possible, and work to the goals of the

Act rather than the letter of its

requirements. Therefore, BJS, after a

substantial study and review process,

has decided that the survey will work to

identify all persons with disabilities, as

well as identify those disabilities that

meet the definition of developmental

disabilities as required by the legislation.

The survey will also have questions to

identify types and degrees of disability

to the extent possible.

As stated above, the goal in making

these decisions was to be as

comprehensive as possible. While it is

necessary to be able to identify people

with developmental disabilities to meet

the requirements of the law, the

distinction between developmental and

other disabilities is not pertinent to the

evaluation of risks of victimization.

Similarly, BJS decided that it would

not be sufficient to create a module that

only differentiated people with

disabilities from persons without

disabilities. Such a dichotomy ignores

the differences in vulnerability to

victimization associated with different

types of disability or severity of

disability. There is no reason to believe

that, say people with profound mental

retardation and people with hearing

impairments would necessarily have

similar susceptibilities to victimization.

The necessity of producing estimates of

victimization for people with specific

types and degrees of disability is limited

by the numbers of sample cases

available for analysis. Therefore, even if

it is possible to identify with great

exactness the specific types and degrees

of disability for every person in the

sample, at least some aggregation will

be required to produce reliable

estimates.

Developing a Plan

The early efforts on the project

were primarily involved in gaining an

understanding of the nature of disability,

the problems associated with measuring

it and developing a network of people to

draw on in future work. BJS staff

initiated a broad range of activities after

the bill’s enactment, including
Series 4, No. 32 [ Page 27

commissioning a review of existing

literature on disability statistics, meeting

with national and State officials working

in the area of disability, and becoming

active participants in working groups

dealing with disability statistics.

A number of Federal agencies are

currently grappling with the design of

survey questions to identify persons

with disabilities. Some agencies, such as

the Bureau of Labor Statistics have

requirements similar to that in PL

105–301. Other agencies are attempting

to identify populations of people with

disabilities to address their particular

programmatic concerns. A Governmentwide group, the Federal Interagency

Subcommittee on Disability Statistics

(ISDS), has been meeting on a monthly

basis for some time to discuss the issues

related to identifying people with

disabilities and coordinate research in

this area.

BJS also found that the Bureau of

Labor Statistics had convened a research

group to help design questions related to

disability on the Current Population

Survey (CPS). BJS began to attend

meetings of both of these groups and

has continued to use them to critique

proposals and the strategy it is pursuing

in this area.

At the same time, BJS began to

establish working relationships with

people in the research and disability

advocacy communities. A key reason the

Crime Victims with Disabilities

Awareness Act was passed was the

concerted effort by the disability

advocacy community to raise awareness

of the extent to which people with

disabilities become crime victims. BJS

recognized that for the estimates

eventually achieved through our efforts

to be accepted as true reflections of the

experiences of people with disabilities, it

was necessary to involve knowledgeable

researchers and advocates of disabled

people into the planning process.

In August 1999, BJS convened a

group of experts from within and

outside the Federal Government to begin

the coordination process, obtain

information about other disability-related

surveys, and brainstorm on the issues

and possible strategies.

In October 1999, BJS participated

in a Workshop on Victims with

Disabilities sponsored by the National

Institute of Justice and conducted by the

National Academy of Sciences. This

workshop, convened to meet another

requirement of the Crime Victims with

Disabilities Awareness Act, brought

together officials from a number of

Federal, State, and local agencies,

researchers from academia, and

advocates from a variety of

organizations involved in programs for

persons with disabilities. At the

workshop, a number of commissioned

background papers were presented and

discussed, focusing on both conceptual

and programmatic issues related to

victimization of people with disabilities,

especially developmental disabilities.

Throughout this project, BJS has

relied on the considerable resources

afforded by the Census Bureau. Since

Census fields the NCVS for the Bureau

of Justice Statistics, it was important

that they be involved in the planning.

More than that, however, they have the

resources to test and evaluate

prospective methodologies and help

determine the best strategies to pursue.

Implementing a Strategy

Building upon the information

received through the review of the

literature, discussions with all of the

groups and individuals referenced above,

as well as a review of the survey

attributes related to producing measures

of victimization against people with

disabilities, BJS staff began to construct

a strategy to address the mandate with

which it had been presented.

The basic components of the

strategy BJS developed are as follows:

+ Adding questions to the existing

NCVS to determine whether the

person has a disability.

+ Developing modifications to

question wordings, proxy respondent

rules, interview procedures, and

interviewer training to improve the

information gathering process within

the context of the NCVS interview.

+ Explore the enhancement of the

NCVS sampling frame to

oversample people with disabilities.

+ Explore enhancement of the NCVS

sampling frame to contain an

institutional component.

Given the complexities involved in

operationalizing this strategy, it is being

implemented in phases. The first two

items comprise the first phase, and are

the focus of current efforts. The last two

items have been discussed, but are

presently tabled as future activities once

the first phase is completed.

Adding Questions on

Disability

Building upon the early work, BJS

and the Census Bureau drafted a set of

questions designed to identify people

with disabilities to be added to the

ongoing NCVS. One component of the

question set also enabled identification

of developmental disabilities. The draft

questions were a synthesis of questions

currently being administered in a

number of other Federal surveys such as

the National Health Interview Survey,

the Survey of Income and Program

Participation, and the American

Community Survey. Other surveys,

identified by the literature search by the

Census Bureau, were also reviewed in

the process of developing the questions.

The question strategy adopted was

one that utilized a short series of

questions to determine respondents’

disability status based upon their ability

to perform specific activities of daily

living. This strategy was adopted

because of a requirement to minimize

respondent burden on a survey whose

real purpose is to measure crime

victimization, not disability. Rejected

therefore was a more comprehensive set

of questions closer to that used by most

health-related surveys that asks

respondents first about the presence of a

set of specific health conditions,

impairments, and disabilities, the

severity of these conditions, and their

abilities to perform major life functions.

BJS and Census then submitted the

draft questions to a series of reviews. In

early 2000, the questions were presented

both to the Census Center for Survey

Methods Research and to the

Interagency Subcommittee on Disability

Statistics. Based upon the critiques from
Page 28 [ Series 4, No. 32

these groups, some modifications were

made to the questions. In July 2000,

BJS added the questions to the NCVS

on a test basis. These questions are

presented in appendix A. Because this is

the first implementation of these

questions, BJS limited their inclusion.

Every household in the NCVS sample is

interviewed 7 times over a 3-year

period. Between July and December

2000, only ‘‘outgoing rotation group’’

households, those being interviewed for

the seventh and last time were eligible

for the disability questions. Within these

households the questions were only

administered to people reporting crime

incidents. This was done to minimize

respondent burden while evaluating the

questions, and at the same time obtain

an initial reading of the number of

respondents with disabilities who would

report crime victimization.

Census is reviewing all responses to

these questions to determine how well

respondents understand the concepts and

how well the questions obtain

information about any health conditions

or disabilities people may have.

Preliminary conclusions are that the

questions require some modification, but

that the NCVS as the sample is

currently constituted will probably not

accumulate enough cases to allow for

more than very broad annual estimates

of victimization of people with

disabilities.

In order to obtain a wider review, in

early 2000 BJS solicited comments on

the draft disability questions from more

than 150 individuals from academia,

national, State and local government

agencies, and public and private

practitioners as part of a periodic

renewal of the survey’s Office of

Management and Budget approval. The

solicitation was also published on the

BJS Web page for increased public

exposure. The comments and

suggestions resulting from this

solicitation contributed to subsequent

revisions to the questions.

At the same time, the Census

Bureau also continued to evaluate the

questions. During the spring and

summer of 2000, two rounds of

cognitive testing were conducted.

Respondents with a broad range of

disabilities were recruited and

administered the questions utilizing a

procedure developed to access

respondents’ interpretation of the survey

questions and concepts.

This testing identified a number of

problems with the draft question set,

including sequencing and wording of

some concepts. Additionally, the

question concerning activity limitations

failed to elicit some actual impairments.

Based upon this test, the questions were

revised and a second phase of cognitive

testing conducted. The results of this

round of testing were evaluated and

some additional changes were

incorporated. This set of questions is

presented in appendix B.

This aspect of the testing and

evaluation of questions to identify

disabilities was limited by the small

numbers of cases available for

consideration. Therefore, BJS is

developing another research activity to

help develop a set of questions. In the

spring of 2001, BJS plans to interview a

sample of 200 people with

developmental disabilities drawn from

California’s Client Development

Evaluation Report (CDER) program.

The goals of this project are twofold:

+ Determine how well the draft

disability questions identify persons

known to be receiving services for

cognitive and other disabilities

+ Evaluate modifications to standard

NCVS victimization questions and

survey procedures that may enhance

the quality of information obtained

from people with intellectual and

other disabilities

While the CDER file includes

people with severe and profound

intellectual disabilities, this study will

be restricted to individuals who have, at

most, moderate retardation, since those

with more severe intellectual disabilities

are more likely to reside in institutions,

which are outside the current NCVS

sampling frame.

Plans call for the sample to be

divided into two groups. One group will

be administered the current NCVS

instrument, plus the most current draft

disability questions. This will be the

control group. The study group will be

administered instruments that have been

modified to simplify the language. In

addition, the sample will include a small

number of people without identified

disabilities (not drawn from the CDER

list) to act as additional controls.

Interviewers will complete diaries

recording problems and other pertinent

information about every interview and

interviewer debriefing sessions will be

held to further evaluate the results of the

study.

To assist in developing this study,

BJS has contracted with a consultant

with extensive experience in

interviewing people with developmental

disabilities. The consultant will also

assist in training interviewers and

reviewing the results of the study.

The results of the California pretest

will be evaluated to further revise and

improve the set of disability questions.

The resulting questions will be

incorporated into the NCVS interview. It

is likely, however, that further revisions

will be made as the first data are

analyzed. Therefore, those expecting

data in the near future are likely to be

disappointed.

In addition to the question

development, in the coming years, BJS

and the Census Bureau will undertake

several long-term initiatives to further

implement its strategy to create a viable,

reliable measure of victimization against

people with disabilities. Experience with

initiatives to develop measures of

victimization in other areas, such as

violence against women, teaches that the

development of viable measures is an

iterative process. Each step produces

some improvements. Ultimately, this is a

complex problem that will require a

series of refinements in order to meet

the overall goal of achieving a measure

of victimization of persons with

disabilities.

References

1. Petersilia J. Invisible victims: Violence

against persons with developmental

disabilities. Human Rights, Volume 27,

No. 1. 2000.

2. Sobsey D, Doe T. Patterns of sexual

abuse and assault. Journal of sexuality

and disability. Volume 9, No. 3.

243–59. 1991.
Series

4, No. 32[ Page 29

3. Sorensen D. The invisible victims.

Impact.Volume 10, No.2. Institute on

Community Integration, University of

Minnesota.

4.Wilson C. and Brewer N. The

incidence of criminal victimization of

individuals with an intellectual

disability.Australian Psychologist.

Volume 27.114–7. 1992.
Page 30 [ Series 4, No. 32
Series 4, No. 32 [ Page 31
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Series 4, No. 32 [ Page 33
Page 34 [ Series 4, No. 32
Series 4, No. 32 [ Page 35
Page 36 [ Series 4, No. 32
Series 4, No. 32 [ Page 37
Part 2. Discussion of Papers
Series 4, No. 32 [ Page 41

Discussion of the Disability

Survey Papers Presented at the

Statistical Policy Seminar

by Katherine D. Seelman, National Institute on Disability and

Rehabilitation Research

Good afternoon. I am pleased to be today. The subcommittee includes

here today on behalf of the National representatives from agencies that are

Institute on Disability and Rehabilitation part of the Interagency Committee for

Research. I want to underscore several Disability Research. Most Federal

points that were made here this agencies and numerous researchers are

afternoon. included. I mention the subcommittee

Along with many others, I have because it is one model of interagency

worked over the years to assure exchange.

inclusion of people with disabilities in Disability statistics can be gathered

our data collections. Any data collection in two general ways. First, one can

that has policy implications—whether in conduct a large-scale survey of people

employment, crime, health, or other with disabilities. Such a survey can

areas—must include a way to identify include questions to assess numerous

the implications for people with factors. The National Health Interview

disabilities. Today’s session includes Survey on Disability was such an effort.

papers that demonstrate that we have Conducting a national disability survey

made some progress in that direction. is a great undertaking, one that has not

There is a critical need for been done often enough. However, the

interagency collaboration to assure large-scale survey inevitably makes

inclusion of people with disabilities in compromises in the amount of data that

data collections. At the present time, as can be collected to address some policy

today’s papers indicate, there are questions.

independent efforts underway to identify A second approach to gathering

ways to measure impacts upon people disability statistics is inclusion of

with disabilities. Our presenters appropriate measures in existing data

described significant progress in collections, such as the Current

including people with disabilities in Population Survey and the National

their respective data collections. Crime Victimization Survey. The

However, the questions that identify advantage of this approach is that we

people with disabilities are being can draw upon the full extent of those

developed, to a great extent, existing surveys. In addition, we can

independently of one another. I obtain relevant information on a

recognize that there is some overlap continual basis rather than having only

among participants in the respective the large-scale disability survey as an

efforts. Nonetheless, whether by infrequent measurement tool.

mandate or purpose of the data We need an effort to develop

collection, the disability measures differ. consistent measurements of disability

The Interagency Subcommittee on using short sets of variables. In the past,

Disability Statistics has been an ongoing through the National Academy of

means to monitor the progress of the Sciences, we have seen efforts focused

various developments described here on measuring functional capacity and on

measuring work disability. There is

interest in the government, academic,

and consumer communities for an effort

to develop measures to assure that

people with disabilities are counted in

all efforts that help develop policy.

Along with consistent questions

about disability, our data collections

must be sensitive to the needs of people

with disabilities. Some disabilities, such

as sensory and cognitive, may present

special challenges to data collection.

Gerry Hendershot deserves recognition

for his efforts to highlight data

collection issues. We need innovative

strategies to assure that no one is left

out of the picture.

Finally, it is time to rethink the

ways in which we obtain information

about people living in group homes or

institutions. Too many of our efforts

focus upon the noninstitutionalized

populations. The focus on the

nonistitutionalized population excludes

some people with disabilities from our

knowledge base.
Page 42 [ Series 4, No. 32

A Critique of Current Practices

of Measuring Disability in

Federal Surveys

by Monroe G. Sirken, National Center for Health Statistics

A. Introduction doubt, comparability that exists at the

conceptual level was facilitated by

frequent exchanges of information at the

The papers that were presented at Interagency Subcommittee On Disability

the policy seminar session ‘‘Integrating and other interagency committees and

Comparable Measures of Disability in work groups.

Federal Surveys’’ describe the current Exchange of information between

research efforts of four Federal agencies the agencies appears to have been

to collect disability statistics in their insufficient, however, to assure

respective surveys. The four agencies comparability between the agencies in

are the Bureau of Justice Statistics the operational aspects of disability

(BJS), the National Center for Health measurement. The surveys differ in the

Statistics (NCHS), the Bureau of Labor kinds of disability questions asked and

Statistics (BLS), and the Social Security information sources used, and it appears

Administration (SSA). Each agency is that each agency is developing its own

making progress in developing and set of disability questions fairly

testing questions to identify people with independently. Program objectives of the

disabilities in its surveys—no small four agencies differ, questions to

achievement because disability is a identify people with disabilities being

multidimensional concept that presents developed by the agencies differ, and

very difficult measurement problems in counts of people with disabilities

population and medical provider identified in the surveys will differ from

surveys. agency to agency in ways and amounts

The four agencies are in pretty good unknown unless statistical crosswalks,

agreement on the conceptual aspects of which apparently are not under

disability measurement as postulated in consideration at this time, are

the International Classification of constructed between the disability data

Impairments and Handicaps (1), now collected in the different surveys.

known as the International In summary, the four agencies

Classification of Impairments, appear to be doing a pretty good job of

Disabilities, and Handicaps (2). developing disability measurements

Accordingly, the data collection responsive to their respective agency

instruments of all four agencies identify needs but do not appear to be concerned

people with disabilities in terms of the about interagency comparability in

body functions and structures involved disability measurement.

and the extent of personal activity and Typically, agencies in our

societal participation limitation. No decentralized statistical system do not

Acknowledgments

My thanks to Susan Schechter and Gerry Hendershot for helpful comments on an earlier draft of this

paper. The opinions expressed herein are entirely my own, and do not necessarily represent the official

views or positions of the National Center for Health Statistics.

on their own volition greatly concern

themselves with integrating Federal

statistical information especially when

they perceive, as is often the case, that

doing so diminishes their efforts to

expeditiously pursue their own program

objectives. In contrast to this prevailing

viewpoint, I propose the following

paradigm:

it is necessary and effective for

agencies to seek consistency and

comparability in Federal statistics at

the same time they are developing

methodologies that meet their own

distinct programmatic needs.

In part B of these remarks,

arguments are presented in support of

the ‘‘necessary’’ condition of this

paradigm, and in part C, research

strategies are proposed in support of the

‘‘effective’’ condition of the paradigm.

In each part, examples are drawn from

the current activities of the four

agencies as described in the papers

presented at this session.

B. Arguments

Supporting the

‘‘Necessary’’

Condition of the

Interagency Paradigm

In her commentary on these papers

appearing in this report, Dr. Seelman

notes that there is widespread interest

‘‘. . . to develop measures to assure that

people with disabilities are counted in

all efforts that help develop policy.’’ She

stresses the importance for policy

purposes of counting people with

disabilities consistently in all these

efforts. Without interagency

comparability in disability measurement,

for example, it will be difficult to assess

the combined effects of the Americans

with Disabilities Act on the improving

the rights of people with disabilities in

different subject areas such as health,

labor force, and crime. In the absence of

official standards for disability

measurement in Federal surveys, who

else but the statistical agencies

legislatively mandated to collect
Series 4, No. 32 [ Page 43

statistics on people with disabilities,

have greater responsibility to assure

comparability between the disability

measurements of their surveys?

Unless the disability survey

measurements of the four Federal

agencies are integrated, the individual

agencies may be unable to effectively

meet their own programmatic needs for

disability statistics. For example, the

Social Security Administration (SSA)

will depend on disability information

from its single-time National Study of

Health and Activity (NSHA) to make

projections of the future growth in SSA

disability claims. However, unforseen

changes in the national population

would require either redoing NSHA, an

exorbitantly expensive option, or

updating and revising the single-time

NSHA-based projections with disability

information obtained from other sources.

If the latter option is selected, the most

likely other sources for the disability

information will be the ongoing surveys

of the other Federal agencies. Updating

the SSA projections in this manner

would be precarious unless the measures

of disability in Federal surveys are

comparable.

C. Research Strategies

Supporting the

‘‘Effective’’ Condition

of the Interagency

Paradigm

There are short-term research

strategies and long-term research

strategies for coordinating disability

survey research activities of Federal

agencies. The objective of short-term

research is to improve existing

methodologies in the current generation

of disability surveys. The objective of

long-term research is to develop

innovative methodologies for the next

generation of disability surveys. I argue

that coordination of interagency

short-term and the long-term survey

research activities in disability

measurement offers Federal agencies

opportunities to enhance their own

benefits while benefiting other agencies.

It is noteworthy that short-term

strategies for coordinating disability

survey research would be particularly

fruitful now when all of these four

agencies are actively conducting

disability measurement survey research.

Clearly, research coordination would be

cost effective. For example, short-term

research coordination provides

opportunities to reduce duplication of

efforts in questionnaire development and

design, including bibliographic searches

of disability questions, developing

disability questions in cognitive research

laboratories, field testing disability

questions in split-ballot experiments, etc.

It also provides opportunities to make

interagency comparisons of disability

measurements a vital first step in the

direction of disability information

integration. For example, simultaneously

testing the disability questions for the

Current Population Survey (CPS) and

the National Crime Victimization Survey

(NCVS) offers opportunities to compare

the counts of people with disabilities

that are based on two versions of short

sets of disability questions. Embedding

the CPS and NCVS disability questions

in the NSHA field tests offers

opportunities to compare the counts of

people with disabilities that are based on

self-reports of disability in CPS and

NCVS with counts of disability based

on self-reports, medical records, and

clinical observations in NHSA.

Long-term strategies for

coordinating interagency survey research

provide Federal agencies with

opportunities to collectively sustain

basic research in disability measurement

in a decentralized statistical system in

which few, if any, individual agencies

are likely to undertake such research

independently. For example, basic

research on the response effects of

working memory differences between

cognitively impaired and unimpaired

respondents in disability surveys could

lead to innovations in the design of

disability survey instruments and the

analysis of disability survey data (3,4).

Recently, a giant step forward in

coordinating interagency survey and

statistical research was taken when a

research grant mechanism was

established to foster basic survey

research that is oriented to the needs of

Federal agencies. The grant mechanism

is called the Funding Opportunity In

Statistical and Survey Research (5) and

is supported by a consortium of Federal

statistical agencies and the National

Science Foundation. Fortunately, all four

agencies participating in this session are

charter members of the consortium of

Federal agencies that is in supporting

the Funding Opportunity. It would be a

relatively simple matter for these four

agencies to coordinate and support their

common interests in disability

measurement research within the

framework offered by the Funding

Opportunity.

D. A Final Remark

In his paper appearing in this

report, Gerry Hendershot suggests that

‘‘the time may be right’’ for proposing

standards that require or recommend

that all ongoing Federal surveys

routinely collect simple measures of

disability. Basically, I am in agreement

with Dr. Hendershot, but I propose that

‘‘now is the right time’’ to formally

establish interagency work groups to

coordinate disability measurement

research activities among Federal

agencies as an initial step in the formal

process of developing official Federal

standards for disability measurement.

References

1. World Health Organization.

International Classification of

Impairments, Disabilities, and

Handicaps (ICIDH-1). Geneva,

Switzerland. 1980.

2. World Health Organization, (In print).

International Classification of

Functioning, Disability and Health

(ICIDH-2). Geneva, Switzerland.

3. Knauper B, Schwarz N, Fritsch A. The

Perils of Interpreting Cohort

Differences in Attitude Reports:

Question Order Effects Decrease with

Age. Public Opinion Quarterly. 1999.

4. Sirken M. Discussion of papers at the

ASA Memorial Session for Seymour

Sudman. 2001 Proceedings of the

Section of Survey Research Methods.

Alexandria, VA. American Statistical

Association. 2001.
Page 44 [ Series 4, No. 32

5. Federal Committee on Statistical

Methodology. Seminar on the Funding

Opportunities in Survey Research.

Statistical Policy Working Paper 33,

Statistical Policy Office, Office of

Information and Regulatory Affairs,

Office of Management and Budget.

2001.
Vital and Health Statistics

series descriptions

SERIES 1. Programs and Collection Procedures—These reports

describe the data collection programs of the National Center

for Health Statistics. They include descriptions of the methods

used to collect and process the data, definitions, and other

material necessary for understanding the data.

SERIES 2. Data Evaluation and Methods Research—These reports are

studies of new statistical methods and include analytical

techniques, objective evaluations of reliability of collected data,

and contributions to statistical theory. These studies also

include experimental tests of new survey methods and

comparisons of U.S. methodology with those of other

countries.

SERIES 3. Analytical and Epidemiological Studies—These reports

present analytical or interpretive studies based on vital and

health statistics. These reports carry the analyses further than

the expository types of reports in the other series.

SERIES 4. Documents and Committee Reports—These are final

reports of major committees concerned with vital and health

statistics and documents such as recommended model vital

registration laws and revised birth and death certificates.

SERIES 5. International Vital and Health Statistics Reports—These

reports are analytical or descriptive reports that compare U.S.

vital and health statistics with those of other countries or

present other international data of relevance to the health

statistics system of the United States.

SERIES 6. Cognition and Survey Measurement—These reports are

from the National Laboratory for Collaborative Research in

Cognition and Survey Measurement. They use methods of

cognitive science to design, evaluate, and test survey

instruments.

SERIES 10. Data From the National Health Interview Survey—These

reports contain statistics on illness; unintentional injuries;

disability; use of hospital, medical, and other health services;

and a wide range of special current health topics covering

many aspects of health behaviors, health status, and health

care utilization. They are based on data collected in a

continuing national household interview survey.

SERIES 11. Data From the National Health Examination Survey, the

National Health and Nutrition Examination Surveys, and

the Hispanic Health and Nutrition Examination Survey—

Data from direct examination, testing, and measurement on

representative samples of the civilian noninstitutionalized

population provide the basis for (1) medically defined total

prevalence of specific diseases or conditions in the United

States and the distributions of the population with respect to

physical, physiological, and psychological characteristics, and

(2) analyses of trends and relationships among various

measurements and between survey periods.

SERIES 12. Data From the Institutionalized Population Surveys—

Discontinued in 1975. Reports from these surveys are

included in Series 13.

SERIES 13. Data From the National Health Care Survey—These reports

contain statistics on health resources and the public’s use of

health care resources including ambulatory, hospital, and longterm care services based on data collected directly from

health care providers and provider records.

SERIES 14. Data on Health Resources: Manpower and Facilities—

Discontinued in 1990. Reports on the numbers, geographic

distribution, and characteristics of health resources are now

included in Series 13.

SERIES 15. Data From Special Surveys—These reports contain

statistics on health and health-related topics collected in

special surveys that are not part of the continuing data

systems of the National Center for Health Statistics.

SERIES 16. Compilations of Advance Data From Vital and Health

Statistics—Advance Data Reports provide early release of

information from the National Center for Health Statistics’

health and demographic surveys. They are compiled in the

order in which they are published. Some of these releases

may be followed by detailed reports in Series 10–13.

SERIES 20. Data on Mortality—These reports contain statistics on

mortality that are not included in regular, annual, or monthly

reports. Special analyses by cause of death, age, other

demographic variables, and geographic and trend analyses

are included.

SERIES 21. Data on Natality, Marriage, and Divorce—These reports

contain statistics on natality, marriage, and divorce that are

not included in regular, annual, or monthly reports. Special

analyses by health and demographic variables and

geographic and trend analyses are included.

SERIES 22. Data From the National Mortality and Natality Surveys—

Discontinued in 1975. Reports from these sample surveys,

based on vital records, are now published in Series 20 or 21.

SERIES 23. Data From the National Survey of Family Growth—These

reports contain statistics on factors that affect birth rates,

including contraception, infertility, cohabitation, marriage,

divorce, and remarriage; adoption; use of medical care for

family planning and infertility; and related maternal and infant

health topics. These statistics are based on national surveys

of women of childbearing age.

SERIES 24. Compilations of Data on Natality, Mortality, Marriage,

Divorce, and Induced Terminations of Pregnancy—

These include advance reports of births, deaths, marriages,

and divorces based on final data from the National Vital

Statistics System that were published as supplements to the

National Vital Statistics Report (NVSR). These reports provide

highlights and summaries of detailed data subsequently

published in Vital Statistics of the United States. Other

supplements to the NVSR published here provide selected

findings based on final data from the National Vital Statistics

System and may be followed by detailed reports in Series 20

or 21.

For answers to questions about this report or for a list of reports published

in these series, contact:

Data Dissemination Branch

National Center for Health Statistics

Centers for Disease Control and Prevention

6525 Belcrest Road, Room 1064

Hyattsville, MD 20782-2003

(301) 458–4636

E-mail: nchsquery@cdc.gov

Internet: www.cdc.gov/nchs