Keeping Track: 

National Disability Status and 

Program Performance Indicators 

National Council on Disability
 

April 21, 2008
 
National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004 

Keeping Track: National Disability Status and Program Performance Indicators 

This report is also available in alternative formats and on the award-winning National 

Council on Disability (NCD) Web site (www.ncd.gov). 

Publication date: April 21, 2008 

202-272-2004 Voice 

202-272-2074 TTY 

202-272-2022 Fax 

The views contained in this report do not necessarily represent those of the 

Administration, as this and all NCD documents are not subject to the A-19 Executive 

Branch review process. 
 

1
 

 National Council on Disability 

An independent federal agency making recommendations to the President and Congress 

to enhance the quality of life for all Americans with disabilities and their families. 

Letter of Transmittal 

April 21, 2008 

The President 

The White House 

Washington, D.C. 20500 

Dear Mr. President: 

The National Council on Disability (NCD) is pleased to present you with Keeping Track: 

National Disability Status and Program Performance Indicators. This report is the result of 

a year-long effort by NCD to identify valid federal data and to describe the status of the 

U.S. population of Americans with disabilities. 

During the past 30 years, advocates, policymakers, and a variety of public and private 

organizations have undertaken significant efforts to improve the lives of people with 

disabilities, culminating in the passage or improvement of legislation such as the 

Americans with Disabilities Act (ADA), various sections of the Rehabilitation Act, the 

Individuals with Disabilities Education Act, the Ticket to Work and Work Incentives 

Improvement Act, and others. Notwithstanding these various policies, little effort and 

progress has been made to measure and reflect upon the overall effectiveness and 

performance of these laws and policies, and their impacts on the quality of life for people 

with disabilities. 

In 2005, the Government Accountability Office (GAO) conducted a review of 200 federal 

programs located in 20 agencies that served individuals with disabilities. It identified the 

need to transform many of the programs it reviewed to keep pace with the changing 

expectations and challenges of the 21st century. In addition, most participants at a 2007 

GAO forum on modernizing disability programs agreed that multiple indicators were 

needed to measure the success of disability programs and that these measures should 

include not only economic measures such as income and employment, but quality of life 

measures as well. 

Keeping Track: National Disability Status and Program Performance Indicators includes a 

set of statistical social indicators that NCD believes are currently able to measure the 

progress of people with disabilities in important areas of their life, over time. The report 

includes 18 indicators determined by stakeholders to measure “quality of life” using both 

objective and subjective measures. The indicators span a variety of life domains, 

including employment, education, health status and health care, financial status and 

security, leisure and recreation, personal relationships, and crime and safety. Collectively 

they will create a holistic representation of the lives of people with disabilities. 
2
 

This report also lays out a roadmap for the federal government to expand the national 

disability indicator set, as well as a mechanism for installing the set into a key national 

indicator system. This report is consistent with the overall policy direction and progress 

advanced by the Administration through the New Freedom Initiative toward the goal of 

full participation for people with disabilities. NCD looks forward to working with key 

stakeholders in the federal government in the implementation of the recommendations 

in this report. 

Sincerely, 

John R. Vaughn 

Chairperson 

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. 

Senate and the Speaker of the U.S. House of Representatives.) 
3
 

National Council on Disability Members and Staff 

Members 

John R. Vaughn, Chairperson 

Chad Colley, Vice Chairperson 

Patricia Pound, Vice Chairperson 

Milton Aponte, J.D. 

Victoria Ray Carlson 

Robert R. Davila, Ph.D. 

Graham Hill 

Marylyn Howe 

Young Woo Kang, Ph.D. 

Kathleen Martinez 

Lisa Mattheiss 

Lonnie Moore 

Anne M. Rader 

Cynthia Wainscott 

Linda Wetters 

Staff 

Michael C. Collins, Executive Director 

Martin Gould, Ed.D., Director of Research and Technology 

Mark S. Quigley, Director of External Affairs 

Julie Carroll, Senior Attorney Advisor 

Joan M. Durocher, Senior Attorney Advisor
 

Sharon M. Lisa Grubb, Special Assistant to the Executive Director 

Geraldine Drake Hawkins, Ph.D., Senior Program Analyst 

Brenda Bratton, Executive Assistant 

Stacey S. Brown, Staff Assistant 

Carla Nelson, Secretary 
4
 

Acknowledgments 

The National Council on Disability (NCD) wishes to express its gratitude to the following 

people who helped draft this report: Nanette Goodman, Bonnie O'Day, and Allison 

Roche from the Cornell University Institute for Policy Research. 

NCD also expresses its appreciation to the following individuals and organizations 

who gave freely of their time and expertise: Susan Daniels, Consultant, SM Daniels 

and Associates, Washington, DC; David Gray, Associate Professor of Occupational 

Therapy, Washington University School of Medicine, St. Louis, MO; Gerry Hendershot, 

Consultant on Disability and Health Statistics, Washington, DC; Andrew Houtenville, 

Senior Research Associate, Employment and Disability Institute, Cornell University, 

Ithaca, NY; Corinne Kirchner, Consultant, New York, NY; David Ruth, Consultant, 

Charlottesville, VA, Paraquad, St. Louis, MO; Help Yourself Inc., Washington, DC; 

American Association of People with Disabilities, Washington, DC; Laurie Mitchell 

Employment Center, Alexandria ,VA; and the Consortium of Citizens with Disabilities, 

Washington, DC. 
5
 

TABLE OF CONTENTS 

EXECUTIVE SUMMARY ................................................................................................ 7
 

CHAPTER 1: INTRODUCTION .................................................................................... 19 

A. Need for the National Disability Performance and Indicators Project............................... 19 

B. Current Measurement Systems........................................................................................... 23 

C. Organization of the Report ................................................................................................. 26 

CHAPTER 2: FRAMEWORK FOR DISCUSSION OF 

SOCIAL REPORTING SYSTEMS ................................................................................ 29
 

A. Concepts and Definitions ................................................................................................... 29 

B. Brief History of Social Reporting Initiatives in the United States..................................... 31 

C. Objectives of Societal Indicator Systems........................................................................... 33 

D. Quality-of-Life Measures and Social Indicators ................................................................ 34 

CHAPTER 3: EXISTING AND EMERGING SOCIETAL INDICATORS........................ 39
 

A. Key National Indicators Initiative ...................................................................................... 40 

B. The Canadian Experience................................................................................................... 42
 

C. Topical Indicator Systems .................................................................................................. 44 

D. Conclusions and Recommendations................................................................................... 46 

CHAPTER 4: THE STATUS OF PEOPLE WITH DISABILITIES ................................. 49
 

A. General Limitations of Existing Data................................................................................. 50 

B. Identifying Concepts That Are Important to Measure........................................................ 52 

C. Domains and Data .............................................................................................................. 54 

D. Conclusions and Recommendations................................................................................... 68 

CHAPTER 5: KEY DISABILITY INDICATORS ............................................................ 73
 

A. Introduction ........................................................................................................................ 73 

B. Desirable Features of the Disability Topical Indicators..................................................... 73 

C. The Indicators..................................................................................................................... 76 

CHAPTER 6: PROGRAM PERFORMANCE INDICATORS....................................... 105
 

A. Existing Program Performance Measurement Systems ................................................... 106 

B. Integrating Quality of Life Concepts into Program Performance Measures.................... 109 

C. Conclusions and Recommendations................................................................................. 111 

CHAPTER 7: CONCLUSIONS AND RECOMMENDATIONS .................................... 113
 
6
 

REFERENCES............................................................................................................ 119
 

APPENDIX.................................................................................................................. 125
 

Additional resources are available at http://www.ncd.gov/newsroom/publications/index.htm 

APPENDIX A. Review of Societal Indicator Systems 

APPENDIX B. Background and Methodology for Focus Groups 

APPENDIX C. National Data Collection Instruments 

APPENDIX D. Limitations of Existing Data 

APPENDIX E. Data on Individuals with Disabilities 

APPENDIX F. Program Assessment Rating Tool Outcome Measures 

APPENDIX G. National Core Indicators 

APPENDIX H. References 
 

7 

Executive Summary 

During the past few years, policy makers and researchers have attempted to measure 

the status of people with disabilities compared with others in our society. They want to 

know if the lives of people with disabilities have improved since the passage of 

legislation such as the Americans with Disabilities Act (ADA), the Rehabilitation Act, the 

Individuals with Disabilities Education Act, and the Ticket to Work and Work Incentives 

Improvement Act. In addition to measuring overall status, various efforts are now being 

undertaken to measure the effectiveness and performance of these laws and programs, 

and their impacts on people with disabilities. 

Measuring the status of people with disabilities and the extent to which programs are 

assisting their clients to achieve better outcomes is important for many reasons. The 

number of people with disabilities in the U.S. is large and growing: 49.7 million noninstitutionalized people in the U.S. have disabilities, and about 21.5 million of these are 

working-age individuals (U.S. Census Bureau 2003, reported in Iezzoni and O’Day 

2006; StatsRRTC 2005). These numbers are likely to increase with the aging of baby 

boomers. People who acquire significant physical disabilities in early life are living 

longer than in prior years largely because of medical advancements. Measuring the 

status of people with disabilities is also important because the limited data we have 

indicate that the employment rate, level of household income, and educational 

attainment are low, and the poverty and obesity rates among people with disabilities are 

high compared to their peers without disabilities. Program evaluations, such as those 

conducted by the Government Accountability Office (GAO) and the Office of 

Management and Budget (OMB) also show that disability programs could be improved 

(GAO 2005; OMB 2004). 

There is much we do not know about the lives of people with disabilities. Currently, the 

statistics informing the policy debate are predominantly economic, such as employment 

and household income. Such statistics are helpful, but paint only part of the picture. 

Other quality of life dimensions are substantially overlooked. Although some surveys 

cover topics that are related to some aspects of well-being, such as income, assets, or 
health insurance status, they do not necessarily reflect other aspects of well-being as 

they would be defined by the target population. 

This report describes what we know about the status of people with disabilities in the 

U.S., and examines current data to assess the extent to which they meaningfully 

measure the well-being of people with disabilities. While much useful data on the status 

of people with disabilities exists, significant knowledge gaps hamper efforts to improve 

their well-being. Additionally, social indicator systems currently used or being developed 

either underemphasize or do not include people with disabilities. No comprehensive 

report exists describing the status of people with disabilities. 

This report proposes a set of statistical indicators to annually measure the status of 

working-age people with disabilities and compare them to working-age people without 

disabilities in the United States. This report focuses on the working-age population of 

individuals with disabilities, defined as those ages 21 to 64, because many federal 

programs focus on employment, making indicators for the working-age population 

particularly relevant. Additionally, the life circumstances of working-age people with 

disabilities differ enough from the circumstances of children, youth and seniors, that 

separate indicators are warranted; indeed, indicator systems already exist for children 

and seniors. The topical indicator set, which can be produced relatively quickly, 

can provide a foundation for the social indicator systems being developed, and 

stimulate public awareness about the status of people with disabilities and the need 

for improvement. 

This report discusses disability as a socio-demographic characteristic. This may not 

reflect the full experience of disability because disability is an interaction between an 

individual with an impairment and the environment, rather than merely a personal 

characteristic. The report uses this language because it allows discussion of the 

disparity between people with and without disabilities in measures of well-being. 

8 
Social Indicators 

Social indicator systems measure the progress of society as a whole on a given set of 

valued characteristics. Indicator systems can measure attributes of people, institutions, 

the economy, and the physical environment (GAO 2005). Existing indicator systems 

generally cover a particular domain, such as health or education, a particular population 

such as children or the elderly, or cover a particular locality, such as a city or county. In 

2003, the GAO, in cooperation with the National Academies, convened a group of 

national leaders that ultimately began the Key National Indicators Initiative (KNII) to 

develop a comprehensive indicator system for the country as a whole. The goal of the 

initiative is to provide measures that will help Americans assess the nation’s progress in 

key areas, such as economic well-being, health status, and the environment. After 

several years of research at the request of Congress, the GAO recommended in 

November 2006, as part of a report on oversight priorities, that Key National Indicators 

be pursued. 

The designers of the KNII system are using the wealth of existing data from a variety of 

public and private sources to develop a website with data on a set of key indicators that 

cover a wide range of topics from education and business to health and the 

environment. Unfortunately, the surveys used to collect data on many of these topics do 

not contain adequate measures to define disability, or meaningful measures for program 

outcomes. The range of different disability definitions and multiple uses of the term 

“disability” in laws, policies, programs, and data collection instruments make 

comprehensive data on people with disabilities extremely difficult to compile, which 

likely contributes to the fact that there is no comprehensive document that reports on 

the status of people with disabilities in the U.S. This lack of information limits the ability 

to monitor and evaluate the impact of laws, policies and programs on people with 

disabilities, which in turn undermines the nation’s ability to make informed programmatic 

and funding decisions. 

This report presents a brief topical indicator set based upon available data to track key 

indicators over time for people with disabilities. NCD will present current data to 

9 
10 

populate these indicators in each of its Annual Progress Reports. NCD’s Progress 

Report offers an annual opportunity to feature the topical indicator set, and thereby 

stimulate interest among politicians, policy makers, the press, and the public to focus on 

how people with disabilities are or are not making progress as compared to people 

without disabilities, highlighting their continuing needs. These indicators will also provide 

a foundation for engaging with the KNII as it conducts its planned national civic outreach 

over the next two years. The proposed topical indicator set includes the following: 

Table E.1: Topical Indicator Set 

Employment 

Indicator 1: Employment rate 

Indicator 2: Employment rate by education status 

Indicator 3: Median annual labor earnings of full-time/full-year workers 

Indicator 4: Median annual labor earnings of full-time/full-year workers by education 

status 

Education 

Indicator 5: Percent of people with less than a high school diploma 

Indicator 6: Percent of people with at least a college degree 

Health status and health care 

Indicator 7: Obesity 

Indicator 8: Smoking 

Indicator 9: Health insurance status 

Indicator 10: Failure to get needed care because of cost by poverty status 

Indicator 11: Patients who report that doctors or other health providers always show 

respect for what they have to say 

Financial status and security 

Indicator 12: Median household income 

Indicator 13: Poverty status 

Leisure and recreation 

Indicator 14: Participate in leisure time physical activity 

Personal relationships 

Indicator 15: Always or usually get the social and emotional support you need 

Indicator 16: Marital status 

Crime and safety 

Indicator 17: Violent crimes per 1,000 people 

Indicator 18: Property crimes per 1,000 people 
11 

Recommendation 1: NCD recommends that the National Institute on Disability 

and Rehabilitation Research (NIDRR) establish and fund a coalition of disability 

policy makers and advocates to: 1) develop a fuller set of indicators that are 

important to people with disabilities, building on the indicators outlined in this 

report (see Chapter 5); and 2) ensure that disability is included as a demographic 

subgroup as the KNII is developed. The KNII offers an important opportunity to 

integrate disability into a larger national indicator system. When completed, the KNII will 

offer individuals who are looking for disability data relatively easy access to existing 

data. It will highlight the importance of including disability as a subgroup in analyzing the 

relative status and progress of the population and highlight gaps in data about people 

with disabilities. 

Recommendation 2: Promote a standard set of disability questions. Some 

important federal surveys have no disability measures. When measures are included, 

they vary across surveys, often yielding inconsistent and confusing results. A common 

core of disability questions on all federal surveys would improve comparability and 

improve the national discourse about disability programs and policy. 

The definition should identify people “who, because of their functional limitations, are at 

risk for the loss or restriction of opportunities to take part in the normal life of the 

community on an equal level with others” (Altman 2006). Questions aiming to identify 

this group should characterize people by the difficulties they have in undertaking basic 

activities, like walking, seeing, and self-care—and not questions asking if they have a 

condition which limits their ability to participate in society, for example to work or attend 

school. The analysis can then determine to what extent people with functional 

limitations are excluded from society. It is also important that the questions ask about 

functioning without assistive devices, since the presence of assistive devices can assist 

people with functional limitations gain access to society. 

Based on ideas developed by the Washington City Group (Madans et al. 2004, Altman 

2006, Mont 2007) and Stapleton et al. (forthcoming), we propose that the set of 

questions used to operationalize this definition meet the following criteria: 
12 

•	 

•	 

•	 

•	 

•	 

•	 

•	 

•	 

Be reliable and valid when self-reported; 

Include the smallest number of questions possible to capture the needed concepts; 

Be comparable across different national cultures; 

Focus on functional limitations; 

Not include the word “disability” because it can be interpreted differently based on 

age and other factors; 

Include scaled responses to allow the researcher to identify functioning at 

different levels; 

Identify the length of time the person has had the impairment; and 

Not preclude including other measures of disability for other purposes. 

Including a set of questions meeting these criteria on all national surveys will allow us to 

compare the well-being of people with and without disabilities in each of the domains 

covered by the surveys, and to monitor changes over time in response to changes in 

environmental factors such as the economy and public policy. It would also ensure that 

data available for the general population and reported for other socio-demographic 

groups is also available by disability status. A short common set of questions also would 

allow for comparisons across surveys. 

Recommendation 3: Fully disseminate disability data. Federal agencies and other 

organizations that conduct national surveys, such as the US Census Bureau of Labor 

Statistics and the US Department of Health and Human Services Administration on 

Healthcare Research and Quality, should provide comparisons of people with and 

without disabilities in their aggregated data reports and should, where sufficient data 

exists, offer comparisons of people with disability by gender, race, and other sociodemographic characteristics. 
The Status of People with Disabilities 

Some existing surveys probe deeply into certain life domains and are useful for 

measuring the well-being of people with disabilities. Using these data, we identify what 

is known about the status of people with disabilities. To find out what is important, we 

conducted six focus groups with individuals with disabilities, and one focus group with 

service providers. We asked participants what they considered to be important areas in 

which to assess quality of life, and what was important in each area. Based on their 

input, we identified 11 high priority domains or areas of life: employment, education, 

health, financial means, community participation, leisure and recreation, political 

participation, transportation, housing, personal relationships, and technology. Focus 

groups participants also identified 13 crosscutting individual and community dimensions 

that would contribute to a high quality of life. 

Individual dimensions included the following: 

Choice: To have the ability to select from various, acceptable options in important life 

areas, for example: the ability to choose whether and where to work, attend school, or 

participate in civic or community activities; the ability to select among various health 

care providers, insurance companies, and personal assistants; having options regarding 

where and with whom to live and how to spend money; and having the choice to marry 

and have children. 

Spontaneity: To have the ability to make last minute plans to attend community events, 

go out with friends, or visit family. This requires accessible and readily available 

transportation and personal assistance, the ability to use a cell phone, community 

accessibility, and housing constructed to meet universal design requirements. 

Aspirations: To have dreams and set and pursue goals for oneself in life areas such as 

employment, education, health care, or political participation. 

13 
Empowerment: To have: a sense of self esteem; the ability to advocate for oneself; 

understanding and acceptance of disability; knowledge about legal rights, including 

legislation such as ADA; a voice in programs that affect one’s life; and control 

over finances. 

Quality: To be able to: engage in employment that one finds meaningful; access timely 

and high caliber health care irrespective of insurance coverage; have adequate financial 

resources to afford to participate in community activities; have accessible, reliable 

transportation; and foster close, egalitarian relationships with friends and family. 

Financial means: To have the ability to: purchase high quality services, including 

transportation, housing, and personal assistance; obtain a job that pays a decent wage 

with good benefits; and afford purchases required for leisure time activities. 

Overall satisfaction: This category represents overall satisfaction in each domain; 

fulfillment in employment or education; ability to obtain high-quality health care; safe, 

affordable, accessible housing; participation in community events of one’s choosing; 

and having close relationships with friends and family. 

Community dimensions included the following: 

Inclusion and integration: Participating in employment, education, recreation and 

religious activities along with people without disabilities; inclusion in social activities with 

co-workers; integrated housing and transportation; inclusion in exercise and fitness 

activities; having a feeling of belonging or acceptance; and having relationships with 

people with and without disabilities. 

Assistance and support: Having access to help to meet various needs for 

independence, where “independence” means the opportunity to live outside externallycontrolled settings, notably institutions; having assistance in making choices; getting 

informal support from family and friends to enable independence; and having access to 

needed coaching and support services in education and employment. 

14 
Public attitudes: Promoting appropriate expectations by members of the general public 

applied to people with disabilities in employment, education and community 

participation; experiencing high comfort level by members of the general public with 

people with all types of disabilities; having appropriate portrayals of disability in the 

media; increasing public regard of disability as a normal part of life; and being treated 

with dignity and respect. 

Accessibility: Having physical and programmatic accessibility; usability of facilities; 

usable off-the-shelf technology by people with disabilities. 

Non-discrimination: Experiencing fair treatment in employment, housing, education, 

health care, public and private agencies and organizations, lending and voting. This 

category is similar to, but goes beyond, public attitudes to encompass a legal-based 

definition of discrimination. 

Safety/Risk: Safety includes such items as housing located in safe areas and back-up 

system for personal assistance services; risk includes the ability to work without fear of 

benefit loss. 

With this feedback from focus group participants, we reviewed the existing national data 

in each of the 11 domains to report on what is known about the status of people with 

disabilities. While there is some data in each of the domains identified by the focus 

group participants, serious gaps exist in what the nation can measure using current 

data. Most questions related to the crosscutting concepts cannot be addressed with the 

data that are currently available. 

Program Performance Measures 

Program performance indicators, or indicators used for “performance measurement,” 

have a narrower purpose than the societal indicator systems we have been discussing. 

While topical and comprehensive indicator systems attempt to capture the state of 

society, program performance indicators are used by agencies, Congress, and OMB for 

15 
 

ongoing monitoring and reporting of program accomplishments, particularly progress 

toward pre-established goals. 

Most current program performance indicators measure the impact of programs on 

participants. They generally do not measure the number of people who could benefit 

from the program but who do not participate either because they do not meet eligibility 

requirements, are unaware that the program exists, or do not use the program because 

of other entry barriers such as inaccessibility or excessive red tape. 

A second limitation of program performance indicators is that they do not account for 

the complex interaction between the program and other factors, such as the economy or 

other public programs. For example, the percentage of vocational rehabilitation clients 

obtaining competitive jobs at closure partly depends on the quality of the services 

delivered, but also depends on the characteristics of the users, the availability of jobs in 

the economy, and the barriers and disincentives to work created by Social Security 

Disability Insurance and other cash and medical benefits. 

A third limitation is that programs serving a broader population tend to report the 

outcomes by all program enrollees, rather than by different demographic subsets of 

enrollees, and do not allow a program to determine the specific impact on people with 

disabilities. Outcome indicators for programs focusing on people with disabilities, 

particularly employment programs, are evaluated based on a narrow range of indicators 

that do not adequately capture the program’s impact on the quality of people’s lives. 

Recommendation 4: Administrative records of all means-tested programs should 

include a disability indicator. Programs that serve individuals with disabilities, such as 

One-Stop Employment Centers, and TANF, should collect data on the number of 

individuals with disabilities who use their programs and compare outcomes between 

program users with and without disabilities. We recommend that the Interagency 

Committee on Disability Research (ICDR) develop a workgroup to establish criteria on 

which the indicator is based. 

16 
Recommendation 5: Expand the Job Training Common Indicators. NCD should ask 

the Department of Labor to explore options within its administrative data collection 

system to add questions to the Job Training Common Indicators that more adequately 

capture concepts important to the focus groups, including choice in job; whether the job 

uses the employee’s full talents and abilities; whether the wage is appropriate given 

their qualifications; the extent to which they are satisfied with job conditions (including 

place, facility, co-workers, schedule requirements, accommodations, and opportunities 

for advancement); and whether they have meaningful opportunities to make choices 

about the conditions of their work. 

Recommendation 6: Agencies should consider the effects of programs on nonparticipants. Agencies should include participation rates for eligible individuals (or 

potentially eligible individuals) and measures of well-being for those who are denied 

services in their GPRA and PART outcome measures. Improved survey data on people 

with disabilities would help support such measures. 

17 
18 
 

19 

Chapter 1: Introduction 

A. Need for the National Disability Performance and 

Indicators Project 

During the past few years, policy makers and researchers have attempted to measure 

the status of people with disabilities as compared to others in our society. They want to 

know if the lives of people with disabilities have improved since the passage of 

legislation such as the Americans with Disabilities Act (ADA), the Rehabilitation Act, the 

Individuals with Disabilities Education Act, and the Ticket to Work and Work Incentives 

Improvement Act. In addition to measuring overall status, various efforts are now being 

undertaken to measure the effectiveness and performance of these laws and programs 

and their impacts on people with disabilities. 

Measuring the status of people with disabilities and whether programs are truly 

assisting their clients to achieve better outcomes is important for many reasons. First, 

about one-fifth of the non-institutionalized population or 49.7 million people report 

disabilities (U.S. Census Bureau 2003 reported in Iezzoni and O’Day 2006). Among 

those of working age, about 21.5 million or 13 percent have some type of disability. 

(See Exhibit 1.1, which presents disability by type, age, education and race among the 

working age population.) 

The disability prevalence rate increases with age. As shown in Exhibit 1.1, seven 

percent of people ages 21–29 have a disability compared to 26 percent of people ages 

60–64. These rates increase even more dramatically for the population over age 65: 30 

percent of people ages 65–74 have a disability, and more than two-thirds (69%) of 

people over age 85 have some type of disability. Because the numbers of elders will 

grow substantially in coming decades, the number of individuals with disabilities is likely 

to increase. People who acquire significant physical disabilities in early life are living 

longer than in prior years largely because of medical advancements. Healthy aging with 
20 

a disability has become an important clinical consideration and research topic, as 

persons with such conditions as cerebral palsy, polio, and spina bifida increasingly live 

into their seventh decade and beyond (Iezzoni and O’Day 2006). 

Measuring the status of people with disabilities is also important because the limited 

data we have indicate that, in many ways, the status of people with disabilities has 

changed little. They remain below their non-disabled counterparts in many key areas 

where “more is better,” such as employment, household income, and educational 

attainment, and above their counterparts in other areas where a lower rate is preferable, 

such as poverty and material hardship. Other disparities include excess weight, reduced 

physical activity, increased stress, and less frequent mammograms for women over age 

55 with disabilities (Iezzoni et al. 2001; Weil et al. 2002). 

Program evaluations also suggest the need for improvement. The Government 

Accountability Office (GAO) has recently conducted a review of 200 federal programs 

located in 20 agencies that serve individuals with disabilities. It identified the need to 

transform many of the programs it reviewed to keep pace with the changing 

expectations and challenges of the 21st century. In addition to significant program 

redesign, it recommends looking across programs to determine the effectiveness of 

disability programs as a whole (GAO 2005). Such a review requires an examination of 

the entire population of those with disabilities, not just those who receive services from 

the individual programs. 

The Office of Management and Budget (OMB) also sees need for improvement among 

federal programs serving people with disabilities. Through its Program Assessment 

Rating Tool (PART), it continues to mandate outcome measurement as a part of its 

government wide program review. It assesses whether agencies focus on achievable 

outcomes based on long-term goals and benchmarks, and mandates that agencies 

develop a plan of improvement to address deficits. Many of the federal programs that 

serve people with disabilities show need for improvement (OMB 2004). 
21 

Lack of progress on key indicators for people with disabilities may reflect two problems. 

One is that programs and services for people with disabilities have not kept pace with 

the changing expectations and aspirations of people with disabilities and the new 

realities of the 21st century. The other is inadequacies in our measurement and data 

systems. Although some existing national surveys probe deeply into certain areas and 

could be useful in measuring the well-being and progress of people with disabilities, 

they have several notable limitations, including inadequate definitions of disability and 

failure to measure aspects of life that are very important to people with disabilities. 

According to the National Council on Disability (NCD), policy issues on the forefront of 

the disability agenda, such as long-term care services and employment, require relevant 

and routinely collected measures, accurate data, sophisticated analyses, and both 

broad and well-targeted dissemination (NCD 1998). 

There is much we do not know about the lives of people with disabilities. Currently, the 

statistics informing the policy debate are predominantly economic, such as employment 

and household income. Such statistics are helpful, but paint only part of the picture. 

Other dimensions of quality of life are substantially overlooked. Current survey 

questions do not provide a holistic picture of the disability experience. Although some 

surveys cover topics that are related to some aspects of well-being, such as income, 

assets, or health insurance status, they do not necessarily reflect other aspects of wellbeing as they would be defined by the target population. 

Statistics can be a powerful tool for shaping the public debate. Whether viewed as 

“keeping score” or as a “report card,” regular reporting of numbers that can be 

compared over time is a technique for accountability that is likely to stimulate interest 

among politicians, policy makers, the press, and the public. The purpose of this report is 

to develop a set of statistical indicators to annually measure the status of working-age 

people with disabilities in the United States. NCD wishes to describe the status of 

working-age people with disabilities in our society and determine whether current data 

meaningfully measures their well-being. More specifically, the purposes of this report 

are to: 
 

22 

•	 

•	 

•	 

•	 

Describe the status of people with disabilities in the U.S. based on indicators that 

measure their quality of life; 

Identify gaps in knowledge; 

Identify indicators of well-being that can be used to compare people with and without 

disabilities; and 

Recommend strategies to insure that the federal government has adequate and 

appropriate information to measure the success of its programs and policies and to 

track progress of people with disabilities over time. 

This report focuses on the working-age population of individuals with disabilities, 

defined as those ages 21 to 64. We are focusing on this population for several reasons: 

First, many federal programs focus on employment, making indicators for the workingage population particularly relevant. Second, the life circumstances of working-age 

people with disabilities differ enough from the circumstances of children, youth and 

seniors, that separate indicators are warranted; indeed, indicator systems already exist 

for children and seniors. (See Appendix A for a fuller discussion of these indicators.) 

Third, including seniors or children may impact the interpretation of the results. For 

example, including seniors, all of whom are covered by Medicare, in an indicator of 

insurance coverage, may mask the differential in levels of private health insurance 

coverage between working-age people with and without disabilities. 

This report refers to disability as a socio-demographic characteristic. This may not 

reflect the full experience of disability because disability is an interaction between an 

individual with an impairment and the environment, rather than merely a personal 

characteristic. The report uses this language because it allows discussion of the 

disparity between people with and without disabilities in measures of well-being. It is 

the approach used to measure the disparity among racial groups. Race, which is 

consistently used as a socio-demographic characteristic, is also a social construction 

(Wilson 2003) and can be viewed as an interaction between personal characteristic and 

social response; we attribute social value to biological characteristics by labeling an 
individual with a racial identity. This report explores some of these definitional 

issues throughout. 

We begin with a brief review of problems with current measurement systems. 

B. Current Measurement Systems 

No comprehensive indicator system that describes the social conditions of the U.S. 

population exists, but interest in developing such a social indicator system is growing. 

(See Chapter 3.) 

Social indicator systems are one of the chief mechanisms for assessing group status in 

our society. Although social data exist on many important aspects of daily life, there is 

no comprehensive indicator system at the federal level that describes our social 

condition (Miringoff et al. 2003). The official portrait of our nation’s prosperity focuses on 

narrowly-defined economic indicators such as Gross Domestic Product, the rate of 

inflation, the unemployment rate, income per capita, and poverty rates. These economic 

indicators give us a concrete sense of how we are doing as a nation, but important 

aspects of life, such as health status, psychological well-being, environmental factors, 

and others also deserve serious attention. 

Social indicator systems measure the progress of society as a whole on a given set of 

valued characteristics. Indicator systems can measure attributes of people, institutions, 

the economy, and the physical environment (GAO 2005). Indicators are a reflection of 

many factors, such as the scarcity of natural resources relative to the size of the 

population, the state of knowledge and technology, and the structure of governance. 

Indicators also reflect the actions of federal, state, and local governments, a wide array 

of for-profit and not-for-profit entities, and individuals. 

Existing indicator systems generally cover a particular domain, such as health or 

education, or cover a particular locality, such as a city or county. In 2003, the GAO, in 

cooperation with the National Academies, convened a group of national leaders that 

23 
ultimately began the Key National Indicators Initiative (KNII) to develop a 

comprehensive indicator system for the country as a whole. The goal of the initiative is 

to provide measures that will help Americans assess the nation’s progress in key areas, 

such as economic well-being, health status, and the environment. After several years of 

research at the request of Congress, the GAO recommended in November 2006, as 

part of a report on oversight priorities, that Key National Indicators be pursued. 

Social data currently collected are based on surveys without adequate disability 

measures. No comprehensive report exists on the status of individuals with disabilities 

in America. Government agencies or private organizations that serve particular 

segments of our society use national data to assess and report on the status of 

particular groups. For example the Federal Interagency Forum on Aging-Related 

Statistics produces Older Americans, Key Indicators of Well-Being. The Urban League 

annually publishes The State of Black America to focus upon the status of African 

Americans in the U.S. compared to society as a whole. Kids Count, a project of the 

Annie E. Casey Foundation, tracks the status of children in the U.S., providing 

policymakers and citizens with benchmarks of child well-being. These reports are a 

shorthand way to provide a picture of the group’s status and to educate the general 

public about social issues affecting particular groups. They can call attention to 

particular issues, but policy makers and administrators will need more complete data to 

make informed programmatic and funding decisions. 

Unfortunately, many of the surveys used to collect social data do not contain adequate 

measures to define disability, or meaningful measures for program outcomes. Some 

existing surveys probe deeply into certain life domains and appear to be useful in 

measuring the well-being of people with disabilities in some domains. For example, the 

Cornell University Rehabilitation Research and Training Center on Disability Statistics 

(StatsRRTC) uses the American Community Survey (ACS) to develop “Status Reports” 

that provide demographic and economic indicators in several areas, including disability 

prevalence, employment (full and part-time), personal and household income, poverty 

rate, and education (www.disabilitystatistics.org). But the ACS is constrained by the 

24 
conceptual and methodological limitations of its disability questions, and because the 

other ACS questions cannot support a complete, holistic set of indicators. Existing 

social measurement systems generally do not include measures that would enable us to 

identify people with disabilities in a consistent and meaningful fashion, or to evaluate 

their quality of life. The range of different disability definitions and multiple uses of the 

term “disability” in laws, policies, programs, and data collection instruments make 

comprehensive data on people with disabilities extremely difficult to compile. This 

contributes to the fact that there is no comprehensive document that reports on the 

status of people with disabilities in the U.S., similar to those mentioned above. The lack 

of data limits that ability to monitor and evaluate the impact of laws, policies and 

programs on people with disabilities, which in turn undermines our nation’s ability to 

make informed programmatic and funding decisions. 

Existing data on people with disabilities is focused on health and economic measures 

and tells us little about other things that people with disabilities think are important. 

Currently available data provide information on some health and economic indicators, 

for example, obesity, employment, income, and assets. However, we know little about 

how people with disabilities perceive the quality of their lives or their social 

environments. Are their lives meaningful and rewarding? Are they content with the 

quality of their lives? Do they feel accepted by their communities? To what extent do 

they feel their opportunities for social participation are equal to those of their peers 

without disabilities? What is their perception of programs, such as those that provide 

rehabilitation, housing, health care and income support? These are questions for which 

little information is available to answer them. 

Although this report focuses on outcome measurement to support indicator systems for 

working-age people with disabilities, many of the limitations we find are common to 

other indicator systems. In particular, they often do not take the perspective of the target 

group—how their lives are actually lived and how they perceive their own well-being. 

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Limitations on outcome measurement for people with disabilities apply in other contexts 

as well. Most importantly, programs serving people with disabilities are evaluated based 

on outcome measures that often poorly reflect outcomes important to their clients. For 

instance, a program’s success might be based on an employment placement rate 

relative to a benchmark (Projects with Industry, Department of Labor Customized 

Employment Grants); the percent who are employed for at least 90 days (vocational 

rehabilitation), increases in client earnings (Medicaid Buy-In programs); or reduced 

expenditures (Medicaid Home and Community-Based Waiver programs). These do not 

adequately capture the program’s impact on the quality of people’s lives, and are 

therefore insufficient to assess the true value of the program. 

Given the inadequacies of existing indicators as just described, we can anticipate that 

the search for a workable indicator system for persons with disabilities will entail 

considering complex concepts, and ultimately will require some compromises toward 

practical recommendations. The next section outlines how this report tackles 

those challenges. 

C. Organization of the Report 

Chapter Two sets the context for review of performance measurement systems, by 

providing a framework for discussing disability and social indicator systems. The 

chapter also provides a brief history of social indicator systems and a discussion of the 

role social indicator and program evaluation systems can play in measuring quality 

of life. 

Chapter Three reviews existing and emerging social indicator systems. Because no 

comprehensive national system yet exists, it focuses on the Key National Indicators 

Initiative (KNII). It also highlights lessons learned from a similar initiative in Canada. 

Chapter Three also reviews topical and population-specific systems related to health, 

education, aging, and race. 

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Chapter Four reviews available data on the status of people with disabilities and 

identifies gaps in our current knowledge. To identify knowledge gaps, we conducted six 

focus groups with individuals with disabilities, and one focus group with service 

providers. We asked them what they considered to be important areas in which to 

assess quality of life. Based on their input, we identified 11 high priority domains or 

areas of life, including employment, education, health, financial means, community 

participation, leisure and recreation, political participation, transportation, housing, 

personal relationships, and technology. Focus group participants commented on 

what aspects of each area were important. With this feedback, we reviewed existing 

data in each of the 11 domains to report what is known about the status of people 

with disabilities. 

Chapter Five proposes a set of topical indicators to be used to compare people with and 

without disabilities in important life domains over time. These 18 indicators, along with 

the most recent data to populate them, provide a snapshot of the status of people with 

disabilities and a foundation for engaging with the KNII discussed in Chapter Three. 

Chapter Six discusses the use of indicators in measuring the performance of federal 

programs. The chapter describes the Program Assessment Rating Tool (PART), the 

primary government-wide effort to measure program outcomes, as well as other 

program evaluation initiatives. We review several initiatives based on measures that 

assess the quality of life for program participants, including the National Core Indicators 

Project, the Supported Work Indicators, and others. Most of these indicators have 

focused on evaluating specific providers but they can be valuable in development of 

broader program evaluation measures. 

Chapter Seven lists the recommendations that arise out of review, both those related to 

national indicator systems and those related to other data collection efforts. 

Appendices A–G provide additional information on many of the issues covered in 

this report. 
 

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Exhibit 1.1: 

Characteristics of the Working-Age 

Population with Disabilities 

(Ages 21–64) 

Category 

Number or 

percentage 

Total Working-Age Population 169.8 million 

Number with any Type of Disability 21.5 million 

Percentage of Total Population with any Disability 13% 

Disability type* 

Sensory Disability 3% 

Physical Disability 8% 

Mental Disability 4% 

“Self-care” Disability 2% 

“Go-outside” Disability 3% 

Employment Disability 7% 

Race 

White 12% 

Black/African American 17% 

Native American 23% 

Asian 6% 

Other Race or Multiple Races 12% 

Age (years) 

21–29 years 7% 

30–39 years 10% 

40–49 years 12% 

50–59 years 19% 

60–64 years 26% 

Educational attainment 

Less than High School 24% 

High School Diploma or Equivalent 15% 

Some College 12% 

Bachelor’s Degree or More 6% 

*Types of disability total more than “any disability” because an individual may have more than one 

 type of disability. 

Source: Unpublished statistics generated by A. Houtenville using 2005 ACS data. 
29 

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Chapter 2: Framework for Discussion of Social 

Reporting Systems 

The purpose of this chapter is to establish the context and provide a framework for a 

discussion of performance measurement systems. We begin with key definitions and a 

brief history of social measurement systems. We discuss the purpose of social indicator 

systems and the role social indicator and program measurement systems can play in 

measuring the status of the population. 

A. Concepts and Definitions 

In this report, we use the following key concepts and definitions: 

Indicator: a quantitative measure of economic, environmental, social, and 

cultural condition. 

Indicator system: an organized effort to assemble and disseminate indicators. 

Topical indicator system: brings together indicators on a related set of issues, 

such as health or transportation. 

Comprehensive key indicator system: a collection of indicators on a broad range 

of economic, environmental, social, and cultural issues. 

Indicators and indicator systems are the building blocks to measure quality of life and 

evaluate program effectiveness. They are used to measure three types of outcomes: 

Individual Outcomes: Individual outcomes express the impact of a particular 

intervention on a particular individual. For example, an employment outcome might 

express the impact of vocational rehabilitation (VR) services on a VR client. Clinical 

outcomes express the impact of a particular intervention or course of medical 

treatment, such as physical or speech therapy, drug regimens, surgery, or drug 

treatment, on an individual. A measure of clinical outcome might be the number of 

pneumonia hospitalizations after a public immunization campaign. Program and 

societal outcomes reflect individual outcomes. This report focuses on indicators of 
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interest at the federal level such as program outcomes and social indicators and 

does not review clinical outcome systems. 

Program Outcomes: Program performance and outcome indicators focus on the 

effect of a particular government program on its users or those who meet program 

eligibility requirements. They are used for ongoing monitoring and reporting of 

program accomplishments, particularly progress toward pre-established goals. For 

example, an outcome indicator of a state’s vocational rehabilitation program collects 

data on how many clients find employment, whether the employment is full or parttime, the wage rate, whether health insurance or other benefits are provided, and the 

amount of funds spent per case. 

Societal Outcomes: Social indicator systems measure the progress of society as a 

whole on a given set of indicators; e.g., economic, education, health, or home 

ownership. Social indicator systems can answer vital questions including, How are 

we doing as a country, as a state, or as a locality? How do we compare to others 

and how do specific subgroups compare to the population as a whole? Such 

indicators help us assess the position and progress of an entire jurisdiction or group, 

not just the performance of any one program. 

Both societal indicators and program performance indicators play important roles in 

ensuring a responsive and accountable government. Social indicators measure societal 

progress; program performance indicators measure the impact of specific programs on 

people’s lives. But the distinction is sometimes blurry. A social indicator answers a 

“societal outcome” question, such as “Do people have the ability to travel where and 

when they want to go using transportation that is affordable?” For people with 

disabilities, many factors play into the answer—the nature of the individual’s disability, 

their personal family resources, available public transportation, affordable vehicle 

modifications for people with physical impairments, available personal assistants or 

volunteer drivers, mobility training for people who are blind or have cognitive disabilities, 

and availability of assistive technologies. No single agency is responsible for ensuring 

that all of these needs are met. 
 

31 

Program indicators focus on a particular program or group of programs and measure 

the effect of the program on users’ lives. In the above example, an evaluation of a 

paratransit program might focus on the question “Is the program sufficiently flexible to 

permit spontaneous travel?” or “Do the paratransit and fixed-route transit services 

together provide adequate coverage throughout the transit district?” Only one program 

is being evaluated and, in general, the program will have its primary, and perhaps 

only, impact on its participants. In both cases, measures that indicate quality should 

be included. 

In the examples above, both the societal indicator and the program performance 

indicator measure affordability, availability, and spontaneity in transportation. Quality in 

a specific transportation program contributes to quality transportation in the jurisdiction 

as a whole primarily, if not exclusively, through its impact on participants. Even when 

government programs are designed to address a certain issue for people with 

disabilities (such as improving access to transportation), they do not benefit all people 

with disabilities, because only a subset of the disability population uses them. As a 

result, a strong federal law or program may have only a small direct impact on the 

societal measure. 

At the same time, however, such a program can have indirect consequences for society 

that go beyond the services provided to participants. For instance, the availability of 

transportation facilitates employment, shopping and participation in many other 

activities, and increased presence of people with disabilities in social settings can 

influence societal attitudes in ways that might have significant impacts on society. Such 

indirect impacts are captured in societal measures, but it is rarely possible to separate 

the indirect impacts from the total impact. 

B. Brief History of Social Reporting Initiatives in the

 United States 

There is a long history of efforts by leading democracies throughout the world to 

develop and sustain indicator systems. In the United States, efforts to use social 
indicators to provide a picture of our nation’s well-being arose during periodic crises: the 

rapid changes of the Progressive Era, the poverty of the Great Depression, and the 

social movements of the 1960s and early 1970s (GAO 2003). 

Early in the twentieth century, problems of poverty and child labor raised concerns 

about the lack of a consistent monitoring system for the well-being of children and 

youth. To address this problem, the Children’s Bureau compiled a Handbook of Federal 

Statistics on Children, a compendium of data on infant mortality, birth rates, poverty, 

and other child-oriented indicators. This publication represented the first effort by the 

federal government to bring together social information from a variety of sources 

throughout the country and became an early model for social reporting in the U.S. 

(Miringoff et al. 2003). 

During the 1930s, as the Great Depression deepened, federal mechanisms were 

established to gather social data and monitor social conditions. New Deal agencies 

began to coordinate data previously collected by the states. These agencies initiated 

and refined comprehensive national surveys in areas such as labor and health and 

began to document the nation’s social problems. 

Social reporting received little attention until the 1960s, when Congress and the 

Administration wished to explore whether the technology used for space exploration 

contributed to the rise of new social problems. The Commission responsible for this 

investigation discovered that little of the critical information needed to assess American 

life was available. In 1966, President Lyndon Johnson directed the Department of 

Health, Education, and Welfare to explore “ways to improve the nation’s ability to chart 

its social progress.” The resulting study, Toward a Social Report, was viewed as a 

“preliminary step toward the evolution of a regular system of social reporting.” The study 

considered the types of indicators necessary for regular reporting, including measures 

of health and illness, social mobility, the environment, income and poverty, public order 

and safety, learning, science, and art (Miringoff et al. 2003). 

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After Congressional efforts to adopt a multifaceted indicator system failed to pass, the 

Bureau of the Census published Social Indicators, a less ambitious statistical report. 

Follow-up reports appeared in 1973, 1976, and 1980 but, the series was discontinued 

by the Reagan Administration. Today, reports on specific issue areas, such as crime, 

health, education, the elderly, and children are published regularly. There have been no 

further efforts at comprehensive, regular social reporting, but past endeavors have 

helped to shape the developments that are underway today. 

C. Objectives of Societal Indicator Systems 

Societal indicator systems can achieve several objectives: 

Measure Progress: Indicators can measure progress toward national outcomes, 

assess conditions and trends, and help communicate complex issues. They can help 

to assess the overall position and progress of our nation in key areas, frame 

strategic issues, support public choices and enhance accountability (Walker 2007). 

Identify Needs: Because so many government departments are involved in 

disability programs (GAO 2005), societal indicators would provide a “snapshot” of 

how the entire system is performing. This should help decision makers assess 

where adjustments, new programs or greater coordination is needed. For example, 

policy makers in Canada have found that their societal indicators on disabilities have 

drawn attention to the fragmented nature of disability programs across many 

departments and governments (Bennet et al. 2001). 

Ground Debate: Indicators can provide government decision makers with 

transparent and relatively objective points of reference against which to carry out 

public debate on the goals of programs and services (Bennet et al. 2001). They are 

also a powerful tool for shaping the public debate. Currently, the statistics that inform 

policy discussions are predominantly economic. Such statistics are helpful, but paint 

only part of the picture. Proposed new indicators could be used to expand the 

debate by focusing attention on other dimensions of the quality of life. 
The chief functions of broad societal indicators are to monitor movement relative to 

societal goals and to identify areas for which additional research or government 

attention is warranted. It is important to recognize however, that societal indicators are 

“indicative” of the relative status of different groups of people. They are not intended to 

imply causality. For example, data show that women with disabilities are less likely to 

have mammograms than women without disabilities (Iezzoni et al. 2001). But what 

causes this disparity? It might be that many mammogram machines are not physically 

accessible or that provider attitudes discourage use. It might be that disability is highly 

correlated with low income and low income leads to lower use of preventive care or lack 

of affordable, accessible transportation to travel to appointments. It might be that 

women with disabilities are more likely than others to rely on Medicaid, and there are 

too few Medicaid providers. Each of these possibilities leads to a different policy 

intervention. The social indicator is a signal that there is a problem, but additional 

research is needed to identify the cause. 

D. Quality-of-Life Measures and Social Indicators 

The primary purpose of this report is to identify quantifiable measures that represent a 

person’s quality of life (QOL). Various disciplines approach and define QOL, and its 

closely related topics of socioeconomic well-being and happiness, differently. 

 Philosophers have been debating the essential qualities of happiness for millennia. 

One school of thought believes that true happiness lay in the devotion to intellectual 

thought and the rejection of worldly goods (Russell 1945). Aristotle, on the other hand, 

thought that happiness lay in virtue (Russell 1945). The notion of happiness is 

subjective and everyone must find their own path to “happiness.” 

We define QOL as “having the means and wherewithal to pursue happiness—however 

defined by each person.” This definition is consistent with the thinking of Thomas 

Jefferson, who included “life, liberty and the pursuit of happiness” in the Declaration of 

Independence, as well as with the conclusions of QOL researchers Diener and Suh 

(1997), and our focus group findings. When we asked people with disabilities to define 

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“quality of life” or to answer the question, “What makes you happy?” they consistently 

mentioned concepts such as choice and empowerment. They wanted adequate income 

in order to be able to choose goods and services that would make them happy. Thinking 

about choice in housing, some wanted a place that would allow pets; some wanted to 

choose their roommate; some valued safety above all else. Consistently though, they all 

valued choice as critical to their quality of life. 

Happiness and quality of life are often associated with the presence of favorable 

circumstances external to the individual, such as economic stability, a supportive family, 

access to health care to maximize health, as well as social, cultural and environmental 

conditions. These concepts are also influenced by internal factors such as attitudes and 

perspectives on personal circumstances, feelings of empowerment, and other 

intangibles that are difficult to quantify. 

Social Indicators are used to quantify quality of life. While some social indicators may 

address factors internal to the individual, we adopt the more common approach (JCCI 

2006) and focus mostly on the external environment, which is more measurable and is 

affected by public policies. 

QOL indicators fall into two groups: 

Objective measures that represent social facts independent of personal 

evaluations, such as level of education or use of health care; and 

Subjective measures which are based on the individual’s perception and evaluation 

of social conditions, such as life satisfaction or perception of justice. 

Objective measures, subjective well-being measures, and traditional economic indices 

are needed in unison to understand human quality of life, and to make informed 

decisions about public policy and funding (Diener and Suh 1997). Because objective 

measures are easier to gather than are individuals’ subjective perceptions of their social 

environment, comparing objective measures across subpopulations and over time is 
relatively straightforward. However, decisions involved in selecting and measuring the 

variables are not value-free, which limits the objectivity of the data. 

The cost of collecting objective measures varies across measures. As a result, the 

choice of measures collected does not necessarily reflect their importance to society. 

For instance, financial transactions are much easier to document than how individuals 

use their time. As a result, outcome indicators based on financial transactions dominate 

the literature on social well-being, and statistics on time use (e.g., hours of unpaid work, 

time spent on self care, or visiting health care providers) are rarely reported, even 

though they are regarded as important by many people. 

An individual’s sense of well-being is far more complex than can be quantified by even a 

well chosen set of objective measures based on external circumstances. Subjective 

measures are based on the notion that if a person experiences his or her life as good 

and desirable, it is assumed to be so (Diener and Suh 1997). Thus, it is appropriate to 

ask directly about factors such as feelings of joy, pleasure, contentment, and life 

satisfaction. Subjective well-being is not a state of simply being hedonistically happy. 

The central elements of well-being, a sense of satisfaction with one’s life and positive 

affective experiences, are derived from the context of one’s most important values, 

goals and expectations. 

Despite the impression that “subjective” connotes lesser scientific credibility, studies 

have shown that subjective well-being measures possess adequate validity. For 

example, data on the Australian Unity Wellbeing Index, an index of subjective 

measures, has been collected since 2001. Recent studies have found that it is a valid, 

reliable, and sensitive instrument (Cummins et al. 2005). Despite this credibility, most 

measures of quality of life and well-being focus predominantly on objective rather than 

subjective measures. 

In summary, this chapter has established a framework for the discussion presented in 

the remainder of the report, sorting out some useful distinctions between societal 

outcomes and related phenomena, specifically: individual outcomes; program 

36 
evaluations; and quality-of-life assessments. We have drawn attention to objective and 

subjective aspects of outcomes, and measures that correspond to those aspects. This 

chapter also reviewed the early history of attempts at comprehensive social indicator 

systems, and the objectives sought by further work in that arena. The next chapter turns 

to current efforts to develop a social reporting system, along with some well known 

topical indicator systems. 

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Chapter 3: Existing and Emerging Societal Indicators 

Many democratic nations, including Canada, Australia, South Africa and almost all 

European countries, are operating comprehensive key indicator systems and have been 

doing so for years. Even though the U.S. government uses literally hundreds of data 

collection instruments (surveys and administrative records) and spends over $4 billion 

per year collecting data, the data are not easy to find and use. The Federal Interagency 

Council on Statistical Policy provides a portal to data from the websites of over 100 

federal agencies, including program participation data and survey data, accessible at 

http://www.fedstats.gov/. This site links to a vast amount of data which, taken together, 

must be described as “disjointed,” with each data source using different definitions of 

such key concepts as disability and race. The system is difficult to navigate even for 

experienced researchers and policy makers. 

There have been several attempts to rationalize this mass of data. For example, the 

Census Bureau produces the annual Statistical Abstract of the United States and the 

Bush administration presents selected economic and social indicators in the “White 

House Briefing Room” accessible at http://www.whitehouse.gov/fsbr/ssbr.html. The 

Briefing Room social indicators refer to crime, demography, education, and health. 

The notion of disability is substantially absent in both of these compendia. In general, 

the briefing rooms present data for the population as a whole rather than by different 

demographic characteristics, and the Statistical Abstract generally includes disability as 

a health outcome rather than as a socio-demographic characteristic. That is, while it 

includes the number of people with disabilities by age group by state it does not include 

other characteristics of the population with disabilities, such as educational, economic or 

health status. 

Hundreds of U.S. state and local jurisdictions have drawn from the substantial body of 

general population data collected at federal, state, and local levels to assemble 

indicators into an easily accessible tool such as a website or chartbook. Some of these 

indicator systems measure progress toward specific goals or benchmarks; others 
40 

provide more general information about the economic, environmental, social, and 

cultural conditions of a jurisdiction (GAO 2004). 

In addition to these broad-based collections of indicators, there are numerous topical 

indicator systems that are national in scale. Such systems focus on specific topics such 

as health care or education, or specific populations such as the elderly, children, or 

African Americans. 

There is, however, no national indicator set that provides the public with information 

about the nation’s progress on a range of issues. In order to fill this gap, the Key 

National Indicators Initiative (KNII) undertook the challenge of developing and 

disseminating a set of key indicators that would encompass economic, social, cultural, 

and environmental outcomes. The initiative has grown to include diverse leaders from 

government, business, research, the media, and the nonprofit sector (GAO 2004). The 

KNII has recently formed a non-profit organization and is currently planning to release 

the first public version of its website in 2009. In this chapter, we discuss the KNII and 

several existing topical indicator systems with an eye toward identifying whether the 

best strategy for monitoring the status and progress of people with disabilities is to 

integrate disability into the KNII, to develop a separate topical indicator system focused 

on disability, or both. 

A. Key National Indicators Initiative 

In 2003, GAO, in cooperation with the National Academies, convened a forum of 

leaders from different sectors of the economy to discuss the need for and potential of a 

national indicator set. Since then, those individuals and institutions that chose to 

develop the KNII have taken a methodical approach to establishing a “credible, trusted 

source of unbiased, nonpartisan, data” (Hoenig 2007b). They have done extensive 

research on existing indicator systems (GAO 2004), engaged with diverse stakeholders, 

gained financial support from private foundations, established a governance structure, 

developed a prototype demonstration website and begun the design of a civic 

engagement process to help select key issues and indicators. GAO has recommended 
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to Congress that it consider contributing funds to the initiative through a public-private 

partnership (GAO 2005b). 

Over the past two years, the KNII has been pursuing a series of targeted efforts—under 

the auspices of the National Academies—aimed at testing effective and efficient ways of 

choosing topics and indicators as well as disseminating them in a useful manner via 

web-based information systems. Their first round of work on issues and indicators 

produced 22 topical areas and a pool of over 900 candidate indicators. Through a civic 

engagement process which is now being designed in detail, these topical areas will be 

reassessed and a smaller set of key indicators chosen to display on a website. Some 

examples of potential population indicators include: 

Population size and composition 

Leisure time use 

Perception of neighborhood safety 

 Unemployment rate 

Self reported health status 

Life expectancy at birth 

 Crime victimization 

Basic math/reading proficiency 

High school completion rate 

Living arrangements of children 

Real disposable household income 

 Poverty rate 

Population in religious groups 

 Tolerance 

For each indicator ultimately chosen, the website would provide a description of the 

indicator, overall statistics, breakdowns over time, geography and by demographic 

subgroup (where that data is available), description and limitation of the data source, 

and links to the source and related indicators and commentary. 

To choose issues and indicators for the public release of its website, the KNII will use 

research, surveys, and a civic engagement process to bring together both diverse 

groups of Americans and experts from a variety of government agencies, research 

institutions, associations, non-profits, the media, and businesses. They are currently 

soliciting input from a broad range of groups. There has been, to date, only minor input 

from the disability community. 

First, the goal of the KNII is to assemble information, not to collect it. Thus the indicators 

will be based on available data. However, the KNII is committed to highlighting the need 
42 

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for additional data collection for important indicators that cannot be measured with 

existing data (Hoenig 2007b). Second, the set of indicators is national and intended to 

drive decision making; thus it must be comprehensive and it must integrate the links 

and interactions between component measures (GAO 2004). Third, the indicators focus 

on current status and past trends and not on modeling or projecting into the future 

(Hoenig 2007b). 

To be successful at measuring the status and progress of people with disabilities, the 

KNII will have to be attentive to several issues. First, key indicators will need to reflect 

the issues that are particularly important to people with disabilities. For example, there 

will need to be measures of affordable housing, reliable and accessible transportation, 

or community accessibility. Second, since the KNII plans to present many of the 

population-based indicators by race, gender, and other socio-demographic 

characteristics, disability status must also be one of those characteristics. Even if the 

KNII does include indicators to address the first issue, there are significant challenges in 

addressing the second issue, including: 

Many of the data sources the KNII might use do not include disability measures; 

Even in those sources that include disability measures, the measures are limited in 

very significant ways; and 

The definition of disability is not consistent across surveys. 

Only with the full engagement of the disability community can these issues be turned 

into opportunities through KNII that could increase the amount of knowledge available to 

the nation on people with disabilities. 

B. The Canadian Experience 

For the past six years, the Treasury Board of Canada has published annual 

Performance reports designed to provide a “whole-of-government” view of how 

individual departments and agencies contribute to broad outcomes in four areas— 

economic, social, international, and government affairs (Treasury Board of Canada 
43 

2006). It is designed as a companion document to 88 separate Departmental 

Performance Reports, which links each indicator with the government departments that 

can affect it. 

While the Treasury Board developed its indicators, a coalition of public, private for-profit 

and not-for profit organizations, led by the Canadian Policy Research Network (CPRN) 

developed a related but separate indicator initiative. The CPRN set of indicators is 

designed to “measure what matters” (Atkinson Charitable Foundation 2007). The 

architects of the project note that although there are a variety of social welfare indicator 

systems in Canada, the question of which aspects of well-being should be monitored 

remains a “flashpoint of controversy” (Michalski 2002). There has been no effort to 

integrate the Treasury Board and the CPRN indicators. 

Based on the concept that to be legitimate, societal indicators should reflect what 

matters most to the members of a community or a nation, the CPRN organized 40 

“dialogue discussions” with nearly 350 participants in nine provinces across Canada. 

The participants reviewed background materials on quality of life issues and indicators, 

engaged in three-hour dialogue discussions, and identified their priorities for defining 

quality of life. These priorities serve as the basis for selecting the indicators (Michalski 

2002). The final indicators are listed in Appendix A. 

Most recently, the group has undertaken an initiative to aggregate the indicators into a 

single composite measure—the Canadian Index of Wellbeing (CIW) which they hope 

will be used in conjunction with the Gross Domestic Product (GDP) to measure growth 

in Canada. Unlike the GDP which is a single measure, the CIW is an aggregation of 

measures. There is still considerable disagreement over the appropriate methodology 

that should be used to create a statistic that is “comprehensive enough to satisfy the 

statisticians and policymakers but simple enough to be understood by the general 

public” (Laidlaw 2007). 
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C. Topical Indicator Systems 

Topical indicator systems in the US focus on a variety of issues including the business 

cycle (the Conference Board Business Indicators), the environment (e.g., the State of 

the Nation’s Ecosystems, Environmental Protection Indicators for California and many 

others), education (e.g., State Education Indicators, National Science Foundation 

Science and Engineering Indicators), and health (the U.S. Department of Health and 

Human Services, Healthy People 2010). 

In addition, a variety of groups, both public and private, have developed topical indicator 

systems focused on particular populations. For example: 

Children—The Annie E. Casey Foundation’s Kids Count and America’s Children by 

the Federal Interagency Forum on Child and Family Statistics; 

 The Elderly—Older Americans: Key Indicators of Well-Being from Federal 

Interagency Forum on Aging-Related Statistics; 

African Americans—The National Urban League’s State of Black America; and 

People with Disabilities—the NOD/Harris Survey and Healthy People 2010, Focus 

Area Six. 

We review each of these topical indicator systems in Appendix A. 

The topical indicator systems that focus on African Americans, children, and the elderly 

do not generally identify people with disability as a subpopulation. For example, the 

compendia that present information on children presents the data by race, ethnicity, 

gender and age (where appropriate) but not by disability status. The one exception is 

the Older Americans chartbook, but even here, disability is presented as a health 

indicator rather than a subgroup characteristic. Thus, the project is limited to tracking 

the prevalence of disability in the aging population. It does not track other 

socioeconomic and health measures (such as poverty, housing expenditures, 

participation in the labor market, health care expenditures, or source of payment for 

health care) by disability status. 
NOD in cooperation with the Harris Poll, has conducted five surveys between 1986 and 

2004 to measure the participation of people with disabilities in American life. The survey 

asks dozens of questions, many of which change each time the survey is administered. 

However, NOD/Harris developed ten key indicators that are monitored over time. This 

set of indicators is potentially very useful because it includes objective and subjective 

measures and it captures some of the issues identified as important by our focus 

groups. NOD compares the value of the indicator over time for people with disabilities 

and the gap between the value for people with and without disabilities. However the 

indicators have significant limitations. Among others, the sample size of the survey is 

too small to detect important changes in the value of the indicator over time unless they 

are very large. (See Appendix A for more information on NOD indicators.) 

Unlike the NOD/Harris indicators, the data for the “Healthy People 2010” indicators are 

drawn from data sources that are collected as part of ongoing federal surveys and 

administrative data. This approach has the advantage of presenting data that are based 

on larger sample sizes and collected regularly, but the breadth of the indicators is 

limited by the type of questions asked in existing surveys. 

Neither existing indicator system for people with disabilities covers the breadth of issues 

that our focus groups indicated were important. For example, neither addresses the 

domains of housing, financial status and security or technology. Nor do they address 

the dimensions that are important to people with disabilities such as choice, 

spontaneity, and aspirations. 

While the topical indicator systems for African Americans, children, and the elderly do 

not integrate disability status into their reports, they provide valuable insights about how 

to develop a successful topical indicator system. 

Develop a coalition: Although indicator sets can be developed by governmental or 

non-governmental entities (e.g., The Annie E. Casey Foundation, Child Trends, the 

National Urban League, and the NOD), they all rely on coalitions of stakeholders to 

develop and disseminate the product. 

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Select indicators parsimoniously to provide adequate coverage of the subject 

with as few indicators as possible: All the topical indicator systems present a 

wide variety of indicators on a website or in a chartbook. The systems that receive 

the most attention from the media, such as Kids Count, the State of Black America 

and the NOD/Harris Survey of Americans with Disabilities, focus on fewer than 20 

core indicators. 

Avoid composite indicators: Only one indicator system, the State of Black America, 

includes a composite measure of well-being. It allows the National Urban League to 

report the status of African Americans is 73.3 percent in 2007, when compared to their 

white counterparts, considered as 100 percent, up from 73.0 percent in 2005 and 2006. 

Readers cannot identify whether the change of less than half of one percentage point 

represents any real change, or what type of change it might represent. The National 

Urban League does report sub-indices and highlights bellwether individual indicators 

such as unemployment, poverty, homeownership and incarceration rates (National 

Urban League 2007). Two well-known composite indicators of quality of life—Disability 

Adjusted Life Years (DALYs) and Quality Adjusted Life Years (QALYs)—illustrate one 

type of danger in producing a composite indicator. These measures are based on the 

medical model of disability and neglect the value of other outcomes for people with 

disabilities. (See Appendix A for a fuller discussion of these issues.) 

Highlight limitations in existing data: Both the Federal Interagency Forum on Child 

and Family Statistics and the Federal Interagency Forum on Aging-Related Statistics 

include a section in their reports highlighting measures that should be developed and 

data limitations that need to be addressed in order to obtain a complete picture of the 

population (GAO 2004). 

D. Conclusions and Recommendations 

Recommendation 1: NCD recommends that the National Institute on Disability 

and Rehabilitation Research (NIDRR) establish and fund a coalition of disability 

policy-makers and advocates to 1) develop indicators that are important to people 
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with disabilities, building on the indicators outlined in this report (see Chapter 5); 

and 2) ensure that disability is included as a subgroup characteristic as the KNII 

is developed. The KNII offers an important opportunity to integrate disability into a 

larger national indicator system, which is important for several reasons: 

When completed, the KNII will offer individuals who are looking for disability data 

relatively easy access to the data; 

The KNII can highlight the importance of including disability as a subgroup in 

analyzing the relative status and progress of different populations and disparities 

between populations; 

The KNII offers the ability to highlight gaps in data about people with disabilities; and 

The KNII can be sustainable. 

Chapters Two and Three of this report painted the landscape of existing and emerging 

social indicator systems. Although there are some topical indicator systems in discrete 

areas such as healthcare or on specific populations such as children, there are no 

comprehensive national quality of life systems in the U.S. The KNII effort shows 

promise but thus far has lacked meaningful involvement of disability researchers and 

advocates. If a comprehensive social indicator system is to include measurement of the 

status of people with disabilities in a meaningful way, existing surveys sponsored by 

government agencies must include adequate and consistent disability measures. Within 

this context, Chapter Four reviews available data on the status of people with disabilities 

and identifies gaps in our current knowledge. 
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Chapter 4: The Status of People with Disabilities 

In this chapter, we discuss some of the limitations of existing data that should be kept in 

mind when reviewing statistics on disability, including problems with the definition of 

disability, reporting on individuals from diverse cultural or linguistic backgrounds, and 

various statistical limitations. 

To identify knowledge gaps across available data sources, we conducted seven focus 

groups of individuals with disabilities. We asked them to articulate what they consider to 

be important areas in which to assess well-being. (See Appendix B for the focus group 

methodology and characteristics of participants.) We identified 11 high priority domains 

or areas of life, and 13 dimensions within each domain—such as choice, empowerment, 

and inclusion—that focus group participants said were important. We then reviewed 

existing data in each of the domains to report what is known about the status of people 

with disabilities, and to identify gaps in our knowledge. This review will assist us to 

identify current and potential indicators most relevant to individuals with disabilities that 

could be included in a national comprehensive indicator system and/or in a topical 

indicator system. 

This review focuses on data that are currently published or easily available on websites. 

There are potentially useful questions included on some surveys but they are not 

aggregated or reported in a way that facilitates a comparison between people with and 

without disabilities. Even though some of these statistics could be available to 

researchers with computer programming skills, they are not included in our review. 

 Disability data is collected in a large number of federal surveys. In Appendix C, we 

briefly describe each survey, the sample methodology and sample size, the 

dissemination instruments, relevant variables, definition of disability, frequency of data 

collection, ability to analyze data on people with disabilities from different racial and 

ethnic groups, and strengths and weaknesses in ability to provide valid, reliable, and 

comparable disability statistics across time. 
A. General Limitations of Existing Data 

Data on individuals with disabilities have various limitations that affect its usefulness in 

measuring quality of life or in evaluating significant programs. These limitations are 

briefly described below, and discussed more fully in Appendix D. 

Inconsistent definitions of disability: The definition of disability is quite complex and 

varies among different federal and state laws, public programs, insurance plans, and 

organizations. It is thus no surprise that surveys that were designed for varying 

purposes, and which generally use between one and six questions to identify whether 

the respondent has a disability, do not all use the same definition. Appendix C identifies 

the definition of disability used in each survey. 

Inadequate definitions of disability: Some of the survey definitions are particularly 

problematic—most notably the “work limitation” definition. Several surveys ask 

respondents if they have a “disability or medical condition that prevents or limits the 

amount or type of work you can do.” This question equates disability with inability to 

work. Answers are likely to be sensitive to characteristics of the economic or physical 

environment and are likely to differ among individuals with different circumstances even 

with the same level of impairment. These limitations have been discussed at length by 

Burkhauser et al. (2002); Hale (2001), Silverstein et al. (2005) and many others. 

Definitions that are too broad to provide meaningful data on a particular 

impairment group: As an example, the American Community Survey (ACS) combines 

visual and hearing disabilities into a “sensory impairment” category. 

Inability to measure progress for diverse ethnic and racial groups: Although 

people with disabilities with diverse ethnic backgrounds constitute a disproportionate 

share of the disability community and may have unique needs (NCD 1993), they are 

often not adequately represented in surveys. Often, the sample size of specific racial or 

ethnic groups is too small to create separate estimates for them. In many of the larger 

50 
surveys, it is technically possible to measure this subpopulation, but the reporting 

agencies do not cross tabulate race-ethnicity with disability status. 

Limited ability to create a time series: There are few surveys with the same question, 

the same disability indicators and the same sampling methodology across time. The 

CPS is a long-established survey and has not changed the definition of disability since 

1981. However, the survey uses the work-based definition discussed above, which has 

significant limitations. 

Various types of statistical limitations: These limitations include sampling error (the 

sample does not accurately represent the population), coverage error (excluding part of 

the population from the survey, such as persons in institutions or without telephones), 

and nonresponse error (lack of response from certain types of individuals biases the 

results of the survey). 

Statistics not adjusted for other characteristics. Disability is correlated with other 

characteristics such as age. Most data sources compare all people with disabilities to 

all people without disabilities, without regard to age, rather than making adjustments 

for the fact that disability prevalence increases with age. Similar criticisms apply to 

other characteristics. 

Data on people with psychiatric disabilities is particularly poor: Partly because 

there is no common, well accepted definition of psychiatric disability, there is little 

reliable data on prevalence and characteristics. People with psychiatric disabilities are 

sometimes included in the category of “mental disability” or data are only available for 

medically-defined subpopulations of people with specific types of psychiatric 

impairments, such as schizophrenia or depression. Also, because of severe stigma 

pertaining to psychiatric impairments, underreporting is likely by persons with the 

condition or by their family members. 

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B. Identifying Concepts That Are Important to Measure 

As noted previously, we conducted seven focus groups—six groups of people with 

disabilities and their advocates, and one group of service providers. We structured the 

focus groups to yield two outcomes; first, a list of domains that participants feel are 

important, such as employment, housing, education, or health; and second, a list of 

dimensions within each domain that could be used to assess life satisfaction. (See 

Appendix B for a summary of the methodology and the characteristics of the focus 

group members.) 

Domains and Dimensions Identified by Focus Group Participants: Participant 

comments about important quality of life issues could be divided into eleven 

domains, including: 

 Employment 

 Education 

Health and health care 

Financial Status and Security 

 Community Participation 

Leisure and Recreation 

 Transportation 

 Housing 

 Personal Relationships 

 Technology 

 Political Participation 

Several crosscutting dimensions also emerged from the discussion, which we divided 

into individual and community dimensions. Although neither the domains nor the 

dimensions are mutually exclusive, they highlight distinctive aspects of the less tangible 

characteristics participants thought contributed to a high quality of life. Individual 

dimensions included the following: 

Choice: To have the ability to select from various, acceptable options in important 

life areas, for example: the ability to choose whether and where to work, attend 

school, or participate in civic or community activities; the ability to select among 

various health care providers, insurance companies, and personal assistants; having 

options regarding where and with whom to live and how to spend money; and having 

the choice to marry and have children. 
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Spontaneity: To have the ability to make last minute plans to attend community 

events, go out with friends, or visit family. This requires accessible and 

readily available transportation and personal assistance, the ability to use a 

cell phone, community accessibility, and housing constructed to meet universal 

design requirements. 

Aspirations: To have dreams and set and pursue goals for oneself in life areas 

such as employment, education, health care, or political participation. 

Empowerment: To have: a sense of self esteem; the ability to advocate for oneself; 

understanding and acceptance of disability; knowledge about legal rights, including 

legislation such as ADA; a voice in programs that affect one’s life; and control 

over finances. 

Quality: To be able to: engage in employment that one finds meaningful; access 

timely and high caliber health care irrespective of insurance coverage; have 

adequate financial resources to afford to participate in community activities; have 

accessible, reliable transportation; and foster close, egalitarian relationships with 

friends and family. 

Financial means: To have the ability to: purchase high quality services, including 

transportation, housing, and personal assistance; obtain a job that pays a decent 

wage with good benefits; and afford purchases required for leisure time activities. 

Overall satisfaction: This category represents overall satisfaction in each domain; 

fulfillment in employment or education; ability to obtain high-quality health care; safe, 

affordable, accessible housing; participation in community events of one’s choosing; 

having close relationships with friends and family. 

Community dimensions included the following: 

Inclusion and integration: Participating in employment, education, recreation and 

religious activities along with people without disabilities; inclusion in social activities 

with co-workers; integrated housing and transportation; inclusion in exercise and 
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fitness activities; having a feeling of belonging or acceptance; having relationships 

with people with and without disabilities. 

Assistance and support: Having access to help to meet various needs for 

independence, where “independence” means the opportunity to live outside 

externally controlled settings, notably institutions; having assistance in making 

choices; getting informal support from family and friends to enable independence; 

and having access to needed coaching and support services in education 

and employment. 

Public attitudes: Promoting appropriate expectations by members of the general 

public applied to people with disabilities in employment, education and community 

participation; experiencing high comfort level by members of the general public with 

people with all types of disabilities; having appropriate portrayals of disability in the 

media; increasing public regard of disability as a normal part of life; and being 

treated with dignity and respect. 

Accessibility: Having physical and programmatic accessibility; usability of facilities; 

usable off-the-shelf technology by people with disabilities. 

Non-discrimination: Experiencing fair treatment in employment, housing, 

education, health care, public and private agencies and organizations, lending and 

voting. This category is similar to, but goes beyond, public attitudes to encompass a 

legal-based definition of discrimination. 

Safety/Risk: Safety includes such items as housing located in safe areas and backup system for personal assistance services; risk includes the ability to work without 

fear of benefit loss. 

C. Domains and Data 

In this section, we describe the issues that focus group participants identified as 

important factors in the quality of their lives within each domain, the data currently 

available to measure disparity between people with and without disabilities in each 

domain, and knowledge gaps. Appendix E contains further detail on the data we report 
55 

here, as well as data that would be available if all national surveys included a standard 

set of disability questions, or if all federal agency-produced statistics included disability 

status as a socio-demographic characteristic like age or race. 

1. Employment 

Issues identified by the focus groups: Focus group participants raised issues that 

went beyond the usual data collected on wages and hours worked. They stressed the 

importance of finding a job appropriate to their aspirations and long term goals; and 

working in a job they believed to be worthwhile. Service providers also stressed 

matching a client’s qualifications to a job in a field of interest and considering the client’s 

long-term aspirations. 

Many participants emphasized the difficulty of obtaining employment due to employers’ 

negative attitudes and lack of awareness of the employment provisions of the 

Americans with Disabilities Act. They said that people with disabilities are often hired 

for jobs below their qualification levels, because of employers’ low expectations of 

people with disabilities. Other participants thought they were paid lower wages because 

of their disabilities. Participants identified problems after they were hired, including 

unfair termination, lack of accommodation, and lack of inclusion in social activities 

with co-workers. 

Data and gaps: The strongest source of employment data on most populations in the 

U.S. is the Current Population Survey (CPS). However, the definition of disability 

available in the CPS is a work-based definition, whose limitations were discussed 

above. Because of this and other controversies about measuring employment, there 

exists no authoritative time series of the employment rate for people with disabilities 

prior to 2005. For 2005 forward, we can rely on the ACS estimates. The NOD/Harris 

survey asks about employers’ expectations and discrimination. Other than these 

sources, we know very little about important aspects of employment identified by 

the focus groups such as whether they believe the job is appropriate, given 

their aspirations. 
 

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Currently available data include the following: 

In 2005, the employment rate of working-age adults ages 21–64 with disabilities was 

38 percent, compared to 78 percent for adults without disabilities (2005 ACS data 

reported in StatsRRTC 2005). 

The median annual labor earnings (wages and salaries) of working-age (ages 21– 

64) people who work full-time/full-year is $30,000 for people with disabilities and 

$36,000 for people without disabilities (2005 American Community Survey (ACS) 

data reported in StatsRRTC 2005). 

In 2004, 63 percent of unemployed people with disabilities ages 18–64 would prefer 

to be working compared to 42 percent of people without disabilities (Harris 

Interactive 2004). 

In 2000, employed people age 18–64 with disabilities were less likely to report that 

their jobs required their full talents and abilities than those without disabilities (40 

percent of workers with disabilities and 48 percent of workers without disabilities said 

their jobs required their full talents and abilities.) (Harris Interactive 2000). 

In 2004, 22 percent of adults 18–64 with disabilities said they had experienced some 

type of employment-related discrimination (Harris Interactive 2004). 

2. Education 

Issues identified by the focus groups: Participants discussed the desire to choose 

among various educational options, including integrated classrooms or programs that 

specialized in disability. Some participants identified needs for accommodations, such 

as tutors or slower pacing. Group members said they still confronted inaccessible 

school buildings and course materials. For many, cost, especially of college, limited 

their ability to obtain an education. They were aware of few or no financial resources to 

help them. Participants wanted data that would enable them to compare graduation 

rates between people with and without disabilities; as a woman said, “We know we’re 

equal when our mortar boards turn with the rest of them.” 
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Data and gaps: States provide annual data on early childhood education through high 

school in terms of the characteristics of special education students covered under the 

Individuals with Disabilities Education Act (IDEA) and the environment in which they are 

educated. IDEA reports cover graduation rates, but they calculate the rates differently 

from the way graduation rates are generally reported for students without disabilities so 

it is not possible to compare the two groups. Data we have from other sources indicates 

the following: 

In 2005, one-quarter of working-age people (ages 21–64) with disabilities had not 

completed high school compared with 12 percent of working-age people without 

disabilities (2005 ACS reported in StatsRRTC 2005). 

In 2005, school-age children with disabilities (ages 6–21) were more likely to 

spend more than 80 percent of their day in a regular classroom than in 1997 (IDEA 

data 2006). 

Students with disabilities in postsecondary education are more likely to be in twoyear, rather than four-year, colleges and less likely to be pursuing a bachelor’s 

degree compared to students without disabilities (NPSAS 2006). 

While most postsecondary schools offer testing accommodations and personal 

counseling, few offer accessible transport on campus or real-time captioning 

(National Survey of Educational Support Provision to Students with Disabilities in 

Postsecondary Education 2000). 

3. Health and Health Care 

Issues identified by focus groups: Issues related to the quality of health care 

centered on communications with doctors and other medical staff. Focus group 

participants described situations in which medical professionals were not comfortable 

with disability, did not know how to respond to disability-related needs, or did not ask 

questions about drug use, sexual activity, or fitness they believed to be routinely asked 

of other patients. For some, quality health care meant finding a doctor who “treats you 

as a person, not as a condition.” Choosing a therapist or psychiatrist was particularly 
58 

important to people with psychiatric impairments—a choice that was often absent if the 

service was covered by Medicaid or provided by the participant’s group home. 

Participants with physical or sensory impairments talked in detail about inaccessibility in 

health care facilities: e.g., difficulty in finding practices with adjustable exam tables or 

medical information in accessible formats. 

Personal assistance services (PAS) were vital to the daily health of some participants 

with mobility impairments. As one woman said, “As a high-level quad, my quality of life 

is directly determined by access to affordable and reliable attendant care. If I don’t have 

attendant care, I can’t work and I can’t take care of my family.” 

Data and gaps: There is a significant amount of data available on the health and health 

care of people with disabilities, largely due to sources such as the National Health 

Interview Survey (NHIS), the Medical Expenditure Panel Survey (MEPS), the Behavioral 

Risk Factor Surveillance System (BRFSS), the National Health and Nutrition 

Examination Survey (NHANES), and the National Survey of Family Growth (NSFG). 

Despite the breadth of data available, many of the data sources used to monitor the 

health status of the general population do not include measures of disability. For 

example, the National Vital Statistics Mortality and Natality System, the National Survey 

on Drug Use and Health, and the National Ambulatory Care survey do not have any 

indicators of disability. In fact, one of the goals of Healthy People 2010 is to “include in 

the core of all relevant Healthy People 2010 surveillance instruments a standardized set 

of questions that identifies “people with disabilities.” As of 2005, only 17 percent of the 

instruments included such a measure (Healthy People 2010, goal 6.1). 

Although none of the current data sources directly measures choice, spontaneity, 

aspirations, empowerment, quality, assistance and support, accessibility or nondiscrimination, they do provide data on quality, finance, satisfaction, public attitudes 

and, to a lesser extent, inclusion/integration and safety/risk. Because of the quantity of 

data available on health and health care, we present only a sampling of the information 

available on insurance, expenditures, and access. For example: 
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The percentage of people under age 65 with disabilities who have some type of 

health insurance has remained relatively constant at 84–86 percent since 1998, 

compared to 83–84 percent for people without disabilities (NHIS data reported in 

Healthy People 2010). 

People with disabilities ages 18–64 are much more likely than people without 

disabilities in the same age range to rely on public health insurance (MEPS data as 

reported in Iezzoni et al. 2003). 

Among adults ages 18–64, median health care costs and out-of-pocket expenditures 

are much higher for people with an impairment than for people without an 

impairment. The costs differ dramatically by type of impairment (MEPS data as 

reported in Iezzoni et al. 2003). 

In 2004, 28 percent of adults age 18 and older with disabilities reported putting off or 

postponing seeking care that they felt they needed because of cost, compared to 15 

percent of people without disabilities. In 2000, these figures were 28 percent and 12 

percent, respectively (Harris Interactive 2000, 2004). 

In 2004, 18 percent of adults with a disability reported that there was a time in the 

past 12 months when they needed medical care but did not get it, compared with 

seven percent of adults without a disability (Harris Interactive 2004). 

In 2004, 57 percent of patients ages 18–64 with disabilities reported that doctors or 

other health providers always show respect for what they have to say, compared to 

63 percent of patients of the same age without disabilities (MEPS data reported in 

Healthy People 2010). 

4. Financial Status and Security 

Issues identified by the focus groups: Many participants articulated the negative 

effects of their low income on their quality of life. Some saw having more money as an 

integral part of getting the community to listen to and meet their needs. Many 

participants wanted to work to increase their income, but said they were trapped on the 

benefit rolls. In addition to the ability to earn money, participants saw choice in how to 
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spend one’s own money and how to self-direct service dollars, such as for personal 

assistance services, as an essential part of quality of life. 

Data and gaps: The ACS collects detailed information about family and household 

income which is used in reports that include median income, income distribution, 

poverty status, ratio of income to poverty by race, age, education and other variables. 

Data about the causes of limited income, such as being trapped on the benefit rolls or 

restrictions on how the money can be used, are not available. 

With regard to disability and household income, we know that: 

In 2005, 21 percent of people ages 21–64 with disabilities had incomes at or below 

the poverty level versus 11 percent of those without a disability (2005 ACS data 

reported in StatsRRTC 2005). 

In 2005, the median household income of people ages 21–64 with disabilities was 

$35,000 compared to $61,500 for those without disabilities (2005 ACS data reported 

in StatsRRTC 2005). 

In 2004, 40 percent of adults with disabilities age 18 and older have enough assets 

to cover expenses for three months compared to 62 percent of adults without 

disabilities (Harris Interactive 2004). 

5. Community Participation 

Issues identified by the focus groups: Participants defined community participation 

as more than just being involved in community activities. They stressed the importance 

of physical and program accessibility, including communication access for people with 

sensory disabilities, and the enforcement of access laws. They said that one indicator 

of the level of community integration would be the extent to which access laws are 

enforced. They stressed that community participation meant access to activities in 

facilities that were truly usable, for example, with bathrooms located close to the activity. 
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Participants stressed the importance of being able to do things spontaneously, on the 

spur of the moment, without having to plan in advance for transportation, personal 

assistance and accessibility. A man who is deaf wished he could pull off the road and 

use his cell phone to make last minute plans. 

Group participants also talked about public attitudes and their impact upon community 

participation. They said that a measure of participation might be the extent to which 

people with disabilities believe that they are being treated with courtesy and respect by 

the general public. 

Data and gaps: Most aspects of community participation identified as important by the 

focus groups are not covered in any existing surveys. However, existing surveys such 

as the NOD/Harris and the NHIS do provide some information on community 

participation of people with disabilities, for example: 

In 2002, one in five people with a disability (of any age) left his/her house two or 

fewer times per week compared with one in 25 people without a disability (2002 

National Transportation Availability and Use Survey, U.S. Department of 

Transportation 2003). 

Adults with disabilities were less likely to participate in community activities such as 

worshiping at least once a month, and going to a restaurant at least once a week. 

These two measures were first collected in 1986 and have been collected four 

additional times since; differences between people with and without disabilities were 

found in every data year, although the magnitude of the differences varied from year 

to year (Harris Interactive 2004). 

6. Leisure and Recreation 

Issues identified by the focus groups: When discussing recreation, participants 

raised many of the same issues as when discussing community participation, such as 

inclusion in activities not specifically designed for people with disabilities, positive and 

inclusive public attitudes, being able to participate spontaneously, with significantly less 
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advance planning, and funding for personal assistance and transportation for 

recreational activities. One participant said, “So many people with disabilities go home 

and stay home;” she thought more funding for personal assistance for recreation could 

change that. 

Data and gaps: Current data provide some information about the rates of participation 

in leisure and recreational activities of people with and without disabilities. However, 

there is very little information about the ability to participate in activities without 

significant advance planning. 

In 2005, more than half (53%) of adults ages18 and over with disabilities participated 

in no leisure time physical activity compared to 37 percent of adults without 

disabilities. This disparity has remained relatively constant between 1997 and 2005 

(NHIS data reported in Healthy People 2010). 

A smaller proportion of adults with disabilities over age 18 participated in certain 

outdoor activities, such as of boating, camping, fishing and hunting, than people 

without disabilities in 1994. (National Survey on Recreation and the Environment 

1994, reported in McCormick 2000). 

Adults with disabilities are less likely than adults without disabilities to go shopping 

(23% versus 41%), to the theater (22% versus 48%), to live music events (9% 

versus 16%), to sporting events (15% versus 35%), or to other events related to 

hobbies (21% versus 36%) (Harris Interactive 2000). 

7. Political Participation 

Issues identified by the focus groups: Many participants believed that people with 

disabilities did not have a strong voice in politics—due in part to an absence of people 

with disabilities in elected offices, and in part to the lack of an organized, cohesive 

disability community. Participants also mentioned accessibility issues that posed 

barriers to political participation. Some participants simply found it difficult to get to the 

polls on Election Day, while others found some of the new identification requirements, 

such as requirements for ID cards, burdensome. Others mentioned access 
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improvements, including new accessible voting machines that enabled blind people to 

vote independently. Some participants found voting by absentee ballot to be much 

easier than going to the polls. Again, choice in how to vote was the issue. 

Data and gaps: Current data provides some limited information about voter registration 

and voter turnout for people with disabilities but little information about other aspects of 

political participation, such as participation in advocacy organizations and political party 

functions, is routinely collected. 

Although historically, people with disabilities have been less likely than people 

without disabilities to vote in Presidential elections, this gap closed considerably in 

the 2004 election season. Voting-age people with disabilities were nearly as likely as 

those without disabilities to vote in the 2004 elections, with turnout estimated at 52 

percent and 56 percent, respectively—a gap of four percentage points compared to 

an 11 point gap in 2000, and a 17 point gap in 1996 (Harris Interactive 2004). 

Adults with disabilities cite getting to the polls as a barrier to voting more often than 

does the general public. Among those who do not always vote, 44 percent of people 

with conditions that impair physical activity mention this as a reason for not voting. In 

contrast, only 26 percent of the general public cites this as a reason for not voting 

(Pew Research Center for the People and the Press 2000). 

8. Transportation 

Issues identified by the focus groups: Participants who did not drive said that lack of 

public transportation severely hampered their ability to work, obtain an education, and 

participate in the community. They described an ideal transportation system as being 

one that is well-networked throughout the community, reliable, and affordable. They 

wanted a system with courteous staff, that did not require much advance planning to 

use, and that could be used for a multitude of trip purposes. Participants wanted 

accessible transportation that served outside the city limits—so that people with 

disabilities could live in rural communities or safer areas outside the central city. They 

wanted buses that ran more frequently and to more areas. Individuals with hearing 
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impairments wanted to have the ability to request paratransit services via email. Many 

participants thought the best way to achieve the goal of an accessible public 

transportation system was to bring people with disabilities to the table—to let them take 

part in the planning and decision-making process. 

Data and gaps: In response to the lack of information about transportation use among 

people with physical, mental, or emotional disabilities, the Bureau of Transportation 

Statistics (BTS) initiated the 2002 National Transportation Availability and Use Survey. 

This survey has not been repeated so it is not possible to measure progress in reducing 

transportation barriers. We know from existing data that: 

Compared to people without disabilities, people with disabilities were much less 

likely to have driven a car, less likely to be a passenger in a car, and equally likely to 

have used public transportation in the past month (2002 National Transportation 

Availability and Use Survey, U.S. Department of Transportation 2003). 

In 2002, 12 percent of people with disabilities reported having difficulty getting 

needed transportation compared to 3.3 percent of people without disabilities (2002 

National Transportation Availability and Use Survey reported in U.S. Department of 

Transportation 2003). A similar gap in satisfaction is revealed in the NOD/Harris 

surveys; 17 percent of people with disabilities reported that transportation was a 

“major problem” compared to five percent of people without disabilities (Harris 

Interactive 2004). 

The percentage of buses that are ADA compliant has increased from 52 percent in 

1993 to 98 percent in 2004 (U.S. Department of Transportation 2006). However, this 

measure is inadequate to assess true access. The Current State of Transportation 

for People with Disabilities in the United States (NCD 2005) highlights many barriers 

to using public transportation that are not captured by this statistic. 

9. Housing 

Issues identified by the focus groups: Participants spoke of the lack of accessible 

housing in places people want to live. Often, accessible housing is located in unsafe 
65 

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areas, or in areas lacking nearby grocery stores or public transportation. Those who 

owned their own homes, or hoped to do so in the future, wanted financial assistance for 

accessibility modifications. 

Other participants felt strongly that they should have a choice in their neighbors or 

roommates, a particular problem in supported living programs. They wanted more 

options in housing programs—such as being able to choose their roommates, live 

alone, have pets, and not be forced into “disabled/elderly housing” to obtain accessible, 

affordable housing. 

Some participants said they still faced discrimination when seeking housing or loans to 

purchase homes. One participant said she was denied housing because she uses a dog 

guide, so she no longer brings her dog when looking for housing in order to avoid 

such discrimination. 

Data and gaps: There is limited information about the housing status of people with 

disabilities and no national data sources on housing accessibility. There are statistics on 

the number of complaints about fair housing discrimination, but it is difficult to identify if 

an increase in the number of complaints is a result of increased discrimination on the 

part of housing owners or increased awareness on the part of the consumer. 

In 2005, the percentage of working-age people (ages 21–64) with disabilities living in 

owner-occupied housing was 62 percent compared to 69 percent of working-age 

people without disabilities (2005 ACS data reported in StatsRRTC 2005). 

Between 1997 and 1999 the number of families with “worst-case housing needs,” 

defined as being very low income and spending more than 50 percent of their 

income on housing cost, declined among all groups except the elderly and people 

with disabilities. In 1999, at least 22 percent of worst-case households had 

nonelderly adults with disabilities (2002 American Housing Survey (AHS) using a 

constructed variable for disability reported in U.S. Department of Housing and Urban 

Development 2003). 
66 

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As for the state of repair of housing for people with disabilities, data from the AHS 

shows that although only nine percent of the total units are occupied by families that 

receive SSI or other disability income, those families have 29 percent of the homes 

with moderate to severe physical problems (2005 AHS reported in U.S. Census 

Bureau 2006). 

The number of adults with disabilities (age 22 and over) living in congregate care 

facilities has declined from 93,362 in 1997, to 65,575 in 2005 (Survey of State 

Developmental Disabilities Directors, University of Minnesota, reported in Healthy 

People 2010). 

Of 41.8 million Americans with disabilities age 18 and older, 34 percent lived in 

homes modified to meet their special needs. About six percent said they needed 

modifications that they didn’t have (NCHS, 1994–1997 Disability Followback 

Survey). 

10. Personal Relationships 

Issues identified by the focus groups: Participants agreed on the importance of 

personal relationships; as one participant said, “The value of personal relationships is 

so high—they are necessary for a good quality of life.” Another said a high quality of life 

was to, “get married, have an apartment, have kids, like everybody else.” They wanted 

choices as to whether to develop relationships with people with disabilities, people 

without disabilities, or both. Participants thought that agencies could facilitate this 

process by teaching social skills and offering opportunities to meet people. Group 

members also said that educating the public about disability could help people with 

disabilities foster relationships. 

Data and gaps: The only information we have about personal relationships for people 

with disabilities is from the NOD/Harris survey. It is surprising that two data sources with 

great potential in this domain have not been analyzed—the National Survey of Family 

Growth and the National Survey of Families and Households. Both have disability 
67 

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indicators, both have sample sizes large enough to support an analysis of people with 

disabilities, and both have important measures of personal relationships. 

In 2004, 79 percent of people with disabilities socialized with close friends, relatives, or 

neighbors at least once per week (Harris Interactive 2004). The NOD/Harris survey has 

included this measure since 1986. In every year, people with disabilities were less likely 

than those without disabilities to have socialized once a week or more, with the 

difference between people with and without disabilities ranging from 10 to 15 

percentage points. There is no apparent trend in either the percentage of people with 

disabilities socializing or in the disparity compared to people without disabilities. 

11. Technology 

Issues identified by the focus groups: Most participants viewed technology as vital to 

obtaining information, shopping on-line, or getting around in the community. Some 

participants saw a need for more funding for assistive technology for uses other than on 

the job, such as for independence, community participation, or education. 

Other participants said that training in how to use technology was equally as important, 

so that they could obtain maximum benefit from their technology. Others, including 

those who used screen-readers, wished that off-the-shelf hardware and software were 

designed to be accessible to all. 

Data and gaps: Much of the federal government data on the use of technology by 

people with disabilities comes from the 1994 National Health Interview Survey on 

Disability (NHIS-D) and is thus quite dated. Several one-time independent surveys 

(Carlson and Ehrlich 2005) look at access to off-the-shelf technology, often emphasizing 

the role that Universal Design can play regarding the accessibility of technology to 

individuals with various types of disabilities. The above surveys found that: 

The use of assistive technology (AT) had increased dramatically from 1980 to 1994. 

Use of braces, walkers and wheelchairs all more than doubled. About 7.4 million 

people used AT to compensate for mobility impairments, about 4.2 million used 
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hearing aids, and 1.7 million used back braces. Regardless of the type of assistive 

device, usage increased with age. Thus, among those using assistive devices, 

people over age 65 accounted for the majority of mobility, hearing, and vision device 

usage (1994 NHIS-D reported in Russell et al. 1997). 

About 42 percent of the adults with disabilities age 18 and older thought that AT 

devices and services had decreased their need for help from another person “some” 

or “a lot.” (The other choices were “a little” and “none”) (Carlson and Ehrlich 2005). 

52 percent of adults with disabilities thought that better-designed products and 

environmental access features reduced the need for AT devices and services 

“some” or “a lot” (Carlson and Ehrlich 2005). 

The most mentioned payment source for AT devices for adults with disabilities was 

self or other family members in the household (Carlson and Ehrlich 2005). 

D. Conclusions and Recommendations 

There are significant gaps in what the nation can measure using current data and the 

issues that focus group participants identified as important to the quality of life of people 

with disabilities. These gaps are caused by one or more of four types of limitations 

inherent in the national data collection system: 

No national survey with an adequate sample size queries about the topic; 

The survey does not include a disability indicator or set of disability questions that 

can be used to create a disability indicator, so the statistic cannot be computed by 

disability status; 

The agency that disseminates the findings does not present the data by disability 

status; and 

Developing a complete picture of quality of life requires data from multiple data 

sources. With each source using a different definition of disability, meaningful 

comparisons are not possible. 
Given these limitations we recommend the following: 

Recommendation 2: Promote a standard set of disability questions. As we have 

noted, some important surveys, such as the American Housing Survey, the Consumer 

Expenditure Survey and others, have no disability measures. When measures are 

included, they vary across surveys, often yielding inconsistent and confusing results. A 

common core of disability questions on all federal surveys would improve comparability 

and improve the national discourse about disability programs and policy. 

Each of our national surveys is designed to meet a particular goal and each uses a 

definition of disability that is appropriate for that purpose. The surveys should be 

modified to add disability questions that would allow researchers to use the surveys for 

a common purpose—to assess the status and progress of people with disabilities 

across many domains. 

Identifying an appropriate set of questions is challenging. First, stakeholders must agree 

on an appropriate conceptualization of disability. Second, survey developers need to 

address the technical challenge of operationalizing the definition in a way that will yield 

accurate and reliable results (McMenamin et al. 2005). 

The Washington City Group on Disability Statistics, an international group of disability 

scholars and statisticians authorized by the UN Statistical Division, recommends that, in 

order to achieve this goal, the definition needs to identify people “who, because of their 

functional limitations, are at risk for the loss or restriction of opportunities to take part in 

the normal life of the community on an equal level with others” (Altman 2006). 

Questions aiming to identify this group should characterize people by the difficulties 

they have in undertaking basic activities, like walking, seeing, and self-care—and not 

questions asking if they have a condition which limits their ability to participate in 

society, for example to work or attend school. The analysis can then determine to what 

extent people with functional limitations are excluded from society. For this reason, it is 

also important that the questions ask about functioning without assistive devices, since 

69 
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the presence of assistive devices is one of the mechanisms by which people with 

functional limitations gain access to society. 

Based on ideas developed by the Washington City Group (Madans et al. 2004, Altman 

2006, Mont 2007) and Stapleton et al. (forthcoming), we propose that the set of 

questions used to operationalize this definition meet the following criteria: 

Be reliable and valid when self-reported; 

Include the smallest number of questions possible to capture the needed concepts; 

Be comparable across different national cultures; 

Focus on functional limitations; 

Not include the word “disability” because it can be interpreted differently based on 

age and other factors; 

Include scaled responses to allow the researcher to identify functioning at 

different levels; 

Identify the length of time the person has had the impairment; and 

Not preclude including other measures of disability for other purposes. 

Including a set of questions meeting these criteria on all national surveys will allow us to 

compare the well-being of people with and without disabilities in each of the domains 

covered by the surveys, and to monitor changes over time in response to changes in 

environmental factors such as the economy and public policy. It would also ensure that 

data available for the general population and reported for other socio-demographic 

groups is also available by disability status. A short common set of questions also would 

allow for comparisons across surveys. Individual surveys could have additional 

questions to differentiate more groups and provide additional information about those 

persons identified, or not identified, by the common set of questions. 

Recommendation 3: Fully disseminate disability data. Federal agencies and other 

organizations that conduct national surveys, such as the U.S. Census Bureau of Labor 
71 

Statistics and the U.S. Department of Health and Human Services Administration on 

Healthcare Research and Quality, should provide comparisons of people with and 

without disabilities in their aggregated data reports and should, where sufficient data 

exists, offer comparisons of people with disability by gender, race, and other sociodemographic characteristics. 
72 
73 

Chapter 5: Key Disability Indicators 

A. Introduction 

In this chapter, we propose a set of topical indicators intended to measure the progress 

of people with disabilities in important life domains over time. Data for the 18 indicators 

in the proposed topical indicator set can be produced relatively easily and quickly for 

NCD’s annual Progress Report, and will provide a foundation for the Key National 

Indicators Initiative (KNII) discussed in Chapter Three. Including a topical indicator set 

on people with disabilities in NCD’s Progress Report offers an annual opportunity to 

focus on the movement of people with disabilities in relation to their goals as well as 

their continuing needs. Whether viewed as “keeping score” or as a “report card,” such 

regular reporting of numbers that can be compared over time is a technique for 

accountability that is likely to stimulate interest among politicians, policy-makers, the 

press, and the public. 

We begin this chapter by identifying critical features of social indicator systems and how 

the proposed set of indicators addresses each feature. We then present each of the 18 

proposed indicators, along with a brief rationale for selecting the measure, and the 

strengths and weaknesses of each. 

B. Desirable Features of the Disability Topical Indicators 

A number of authors have listed critical features of social indicator systems (Hagerty et 

al. 2001; JCCI 2006; Lane 1992). Below, we present a composite list of desirable 

characteristics along with commonly accepted statistical principles. We also describe 

how we have used these characteristics to select the proposed set of indicators. 

Defined by Stakeholders 

In general—The indicator set must capture the concept of “well-being,” as defined by its 

potential users. The set of indicators should measure quality of life based on what a 
74 

diverse group of community members agrees is important, in relation to the priorities in 

the community’s shared vision or goals. The indicators, taken together, should 

approximately encompass the totality of life experience, and each indicator should 

encompass a substantial but discrete portion of the aggregate (Hagerty et al. 2001). 

In the proposed set—To obtain stakeholder input, we held a series of focus groups 

whose participants identified 11 domains and several dimensions within each domain 

they considered important to a high quality of life. Our goal was to select at least one 

indicator in each of the 11 domains, however, a lack of data in several domains made 

achieving this goal impossible. 

Objective and Subjective Measures 

In general—Both subjective and objective indicators are necessary, but neither is 

sufficient to encompass the totality of life experiences. Many researchers have 

demonstrated that objective indicators of QOL often do not correlate highly with their 

subjective counterparts (Hagerty et al. 2001). Lane (1992) argued that, because quality 

of life is a function of expectations, if we focus entirely on subjective measures we risk 

accepting the “wantlessness of the poor and the acquiescence of the exploited.” If 

we focus entirely on objective measures we might overlook important benchmarks 

of well-being. 

In the proposed set—Although available data on subjective measures is extremely 

limited, we have included both objective measures (employment rate, educational level) 

and subjective measures (perception of whether physicians show respect for patient 

opinions, presence of emotional support) among our topical indicators. Data on 

additional subjective measures could be included as they become available. 

Measurable, Reliable and Valid 

In general—Data for the indicator must be available on a regular basis from a credible 

source. The data must be collected, compiled, and calculated in the same way each 
 

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year. The metric must be able to function as a discriminative instrument (differentiating 

people who have a better quality of life from those who have a worse one) as well as an 

evaluative instrument (measuring how much the quality of life has changed over time or 

in response to a particular intervention). The indicator trend line should respond 

relatively quickly and noticeably to changes in the quality of life. Users must be able to 

identify differences in scores that correspond to trivial, small, moderate, and large 

differences. If the measure fluctuates over time, we must be relatively sure that this 

corresponds with a fluctuation in the quality of life and not be a statistical artifact. 

In the proposed set—For the NCD indicator set we included data that meets the 

following criteria: 

Data can be obtained relatively easily from existing government sources; 

The indicator is measured relatively frequently (annually or bi-annually); 

The survey has an adequate sample size to be statistically reliable; 

Comparison data for people with and without disabilities is available; and 

The identifier for persons with disabilities is not based solely on “work limitation” 

questions, such as those in the CPS. 

Understandable 

In general—If the indicator trend line moves upward or downward, a diverse group of 

people in the community should agree on whether the quality of life is improving or 

declining. For an example that does not fulfill this feature, if the rate of enrollment in the 

food stamp program increases, it is not clear whether that indicates that the program is 

serving a greater portion of people in need (a positive) or that the need is increasing 

(a negative). 

In the proposed set—There does not seem to be any ambiguity in the interpretation of 

potential changes in the direction of each of the proposed set of indicators. 
76 

Comprehensive 

In general—Together, the set of indicators should address as many domains as 

possible to paint a comprehensive picture of the quality of life for people with disabilities. 

In the proposed set—We have included data from as many domains identified by the 

focus groups as possible, given the limitations of existing data noted in Chapter Four. 

Leading and Lagging Indicators 

In general—Some people argue that social indicator systems should be forward thinking 

(how do you feel about the future?) because leading indicators enable a proactive 

policy response. Others suggest that lagging indicators, those that focus on current 

status or past trends, should be used so that responses reflect their current situation 

(JCCI 2006). 

In the proposed set—There is little leading indicator data for people with disabilities 

that meet the criteria we have established, so we have limited our indicator set to 

lagging indicators. 

C. The Indicators 

Exhibit 5.1 presents the proposed set of indicators for working-age people with and 

without disabilities for annual monitoring by NCD. In the following sections, we 

present a brief rationale for each indicator, and discuss their respective strengths 

and weaknesses. 
 

77 

Exhibit 5.1: 

Indicators for Working-Age People with and without Disabilities 

for Annual Monitoring by NCD 

Employment 

Indicator 1: Employment rate 

Indicator 2: Employment rate by educational attainment 

Indicator 3: Median annual labor earnings of full-time/full-year workers 

Indicator 4: Median annual labor earnings of full-time/full-year workers by educational 

status 

Education 

Indicator 5: Education less than a high school diploma 

Indicator 6: Education of at least a college degree 

Health status and health care 

Indicator 7: Obesity 

Indicator 8: Smoking 

Indicator 9: Health insurance status 

Indicator 10: Failure to get needed care because of cost, by poverty status 

Indicator 11: Doctors or other health providers always show respect for what the 

patient has to say 

Financial status and security 

Indicator 12: Median household income 

Indicator 13: Poverty status 

Leisure and recreation 

Indicator 14: Participation in leisure time physical activity 

Personal relationships 

Indicator 15: Social and emotional support always available 

Indicator 16: Marital status 

Crime and safety 

Indicator 17: Violent crimes per 1,000 people 

Indicator 18: Property crimes per 1,000 people 
78 

1. Employment 

Rationale for inclusion: Employment and earnings are the measures most commonly 

used to assess the economic productivity of society and the well-being of individuals. 

Employment can promote financial well-being, including escape from poverty, and 

integration. Employment was identified by our focus groups as a strong indicator of 

social acceptance and positive personal identity. 

During the last 30 years, legislation and policies related to individuals with disabilities, 

including the Americans with Disabilities Act, the Ticket to Work and Work Incentives 

Improvement Act, and the New Freedom Initiative, have emphasized increased 

independence and economic self-sufficiency (Stapleton et al. 2006). Growing from the 

social/environmental model of disability that emphasizes the role of the environment in 

the disability experience, these laws and programs, along with technological and other 

innovations, have opened up new employment opportunities. The employment rate of 

working-age individuals is an important measure of our progress in meeting the goals of 

full opportunity and inclusion embodied in this legislation. 

Employment and earnings are correlated with educational attainment (Becker 1993). 

Our focus groups expressed the desire to find employment appropriate to their level of 

experiential and educational qualifications and wages equivalent to their coworkers in 

similar positions. While we cannot compare wages by occupation between people with 

and without disabilities, we can compare annual labor earnings by education level 

between the two groups. Therefore, we have included the employment rate and mean 

annual earnings by education level for full-time, full-year workers. 
 

79 

Indicator 1: Employment Rate 

Exhibit 5.2: 

Employment Rate of Working-Age People, 2005 

Description: This figure is a bar graph showing the employment rate of people with and 

without disabilities age 21–64 in 2005 as 38% and 78%, respectively. 

Source: 2005 American Community Survey data reported in 2005 StatsRRTC Disability Status reports. 
 

80 

Indicator 2: Employment Rate by Educational Attainment 

Exhibit 5.3: 

Employment Rate by Educational Attainment, Ages 21–64, 2005 

Description: This figure is a bar graph that compares individuals with and without disabilities with less than 

high school graduation, or who are high school graduates, or with some college or an associates degree, or, 

finally, with a bachelor’s degree or higher. The employment rate increases with each increased level of 

education: 25% of people with disabilities and 66% of people without disabilities who are less than high 

school graduates are employed. The figures for high school graduates are 36% and 76%, for some college 

or Associate’s degree they are 36% and 76% and for those with Bachelor’s DegrEees or higher, the 

employment rate increases to 55% for people with disabilities and 83% for people without disabilities. 

Source: Unpublished statistics generated by A. Houtenville using 2005 American Community Survey data. 
 

81 

Indicator 3: Median Annual Labor Earnings of Working-Age People Who Work 

Full-Time/Full-Year 

Exhibit 5.4: 

Median Annual Labor Earnings of Full-Time/Full-Year Workers 

Ages 21–64, 2005 

Description: This is a bar graph showing median annual labor earnings of people with and without 

disabilities, ages 21–64, as $30,000 and $36,000, respectively. 

Source: 2005 American Community Survey data reported in 2005 StatsRRTC Disability Status reports. 
 

82 

Indicator 4: Median Annual Labor Earnings for Full-Time/Full-Year Workers by 

Educational Attainment 

Exhibit 5.5: 

Median Annual Labor Earnings of Full-Time/Full-Year Workers Ages 21–64, 

by Educational Attainment, 2005 

Description: This bar graph shows the median annual labor earnings of full-time/full-year workers by 

educational attainment and disability. People who are less than high school graduates have a median 

income of $22,000 per year regardless of disability status. As the educational status increases, the disparity 

between people with and without disabilities increases. For people with and without disabilities, high school 

graduates have annual earnings of $27,000 and $30,000; people with some college or an Associate’s 

degree have earnings of $32,000 and $35,000, and people with Bachelor’s degrees or higher have annual 

earnings of $47,000 and $54,000, respectively. 

Source: Unpublished statistics generated by A. Houtenville using 2005 American Community Survey data. 
83 

Strengths, weaknesses, and alternatives 

The data are reliable. These data are from the ACS, which has a large sample size 

and disability questions that have been tested by the U.S. Census Bureau’s cognitive 

questionnaire lab. See Appendix D for a fuller description and strengths and 

weaknesses of the ACS and other surveys. 

The ACS does not allow for reporting statistics over time prior to 2005: Although 

the ACS has been fielded annually since 1996, data prior to 2005 are based on samples 

designed for testing purposes rather than the full national sample of three million 

households. Thus, data prior to 2005 is not directly comparable to data from 2005 

forward. We considered using the employment rate and earnings from the NHIS 

because it would allow NCD to develop a time series. However, we rejected this 

alternative because the ACS includes the employment rate of people with disabilities in 

its tables on its website and because the Statistics RRTC monitors the ACS value. 

Reporting the employment rate from the NHIS would require data programming 

expertise, making the ACS a much more promising data source going forward. 

Employment versus unemployment rate: The employment rate is defined as the 

number of people who were working in the two weeks before the survey (or had a job 

but were on vacation) divided by the total population. The denominator includes people 

who did not want to work at that time, e.g., because they were attending school full-time 

or raising children, so it may not be an accurate measure of the percent of people who 

want to work or who are currently looking for work. 

An alternative to the employment rate is the unemployment rate, which is calculated by 

dividing the number of people who are “unemployed” by the number “in the labor force.” 

In this calculation, only people who are actively looking for a job are included in either 

the numerator or denominator. Thus, it excludes people who are not looking for a job 

either because they are discouraged and have given up, or because of work 

disincentives in income support policies. There is a great deal of debate about whether 

the employment rate or the unemployment rate is the appropriate measure of 
84 

employment outcomes for people with disabilities (Stapleton and Burkhauser 2003). We 

have chosen the employment rate in order to capture the status of the whole population 

with disabilities, not just those who are actively searching for employment. 

In the employment rate calculation, an individual is considered “employed” if he or she 

worked at all, even a very minimal amount in the two weeks prior to the survey. We 

considered using a measure of the percent of people who were employed full time for 

the full year. However, given that the flexibility of part-time or intermittent work is 

important for many people with disabilities, we have opted to focus on the overall 

employment rate. 

The employment rate in any particular survey may vary from other surveys because of 

differences in the definitions of disability and employment used. However, finding a rise 

or fall in the employment rate when the same definitions are used over time is generally 

indicative of a societal trend (Stapleton and Burkhauser 2003). 

2. Education 

Rationale for inclusion: Jobs and careers that provide a living wage, benefits, and 

meaningful upward mobility are generally predicated on high levels of educational 

attainment. Focus group participants mentioned other inherent values of education for 

improving quality of life, such as expanding learning and cultural experiences, 

expanding social contacts and promoting integration. 

For persons with disabilities, a stronger positive correlation is demonstrated between 

level of education and rate of employment than is found in the general population 

(Stodden 2002). Lower educational attainment places students with disabilities at 

greater risk of unemployment or underemployment. Therefore, we include indicators to 

measure level of educational attainment. 
 

85 

Indicator 5: Percentage of Working-Age People with Less Than a High 

School Diploma 

Exhibit 5.6: 

Percentage of Working-Age People with Less Than a High School Diploma, 2005 

Description: This is a bar graph showing people, ages 21–64, with and without disabilities, with less than 

high school graduation. These numbers are 25% and 12%, respectively. 

Source: 2005 American Community Survey data reported in 2005 StatsRRTC Disability Status reports. 
 

86 

Indicator 6: Percentage of Working-Age People with at Least a 

College Degree 

Exhibit 5.7: 

Percentage of Working-Age People with Bachelor’s Degree or Higher, 2005 

Description: This is a bar graph showing that 13% of people with disabilities between ages 21–64 have a 

Bachelor’s degree or higher, compared with 30% of people with no disability. 

Source: 2005 American Community Survey data reported in 2005 StatsRRTC Disability Status reports. 

Strengths, weaknesses, and alternatives 

We would like to include the high school graduation rate as an indicator. However, there 

are multiple methods used to calculate the graduation rate (Seastrom et al. 2006) and, 

as noted previously, it is not possible to compare graduation rates of students with and 

without disabilities. 

The focus groups identified integration into mainstream educational opportunities as an 

important priority. Healthy People 2010 monitors progress toward this goal with the 

percent of special education students who are included in the regular classroom more 

than 80 percent of the day. We chose not to include this measure because it has 

several important limitations: 
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•	 

The accuracy of the IDEA data is a function of the quality of the data systems in 

each school district and has many documented inconsistencies between states and 

over time (Westat 2006a, 2006b). 

The statistic includes students who qualify for services under IDEA and have 

Individualized Education Plan (IEPs). Although the federal law defines who should 

qualify for IDEA, there is evidence that the criteria are not applied uniformly across 

different racial and ethnic groups, across states or over time (Coutinho et al. 2002; 

Hosp and Reschley 2003; NCD 2000). Approximately one-fourth of SSI beneficiaries 

ages 14 to 17 did not report any participation in special education programs (Loprest 

and Wittenburg 2005). 

The percentage of IDEA students who are included in the classroom for more than 

80 percent of the day increased from 33 percent to 54 percent between 1991 and 

2005 (IDEA Part B trend data table B4A). During the same period, the number of 

students who qualify for IDEA has increased from 7.7 percent to 9.1 percent of all 

students (IDEA Part B trend data table A). It is difficult to identify whether the 

increase in inclusion is a result of a true increase in inclusion or an expansion of 

eligibility to include less “severe” populations who are more likely to be included in 

the regular classroom (NCD 2000). 

3. Health Status and Health Care 

Rationale for inclusion: Americans are becoming increasingly concerned about their 

own health and the quality of the health care system that serves them. The health of 

people with disabilities can range from excellent to poor. The health status of people 

with disabilities in part reflects the quality of the health care system and health care 

prevention programs. We include obesity as an indicator not only because it is a leading 

cause of preventable chronic disease, but because it also has its own disabling effects 

and causes or contributes to other disabling conditions such as arthritis, diabetes, and 

cardiovascular disease. In addition to causing disability, obesity is also positively 

associated with having a disability. It is a leading cause of secondary disabling 

conditions (Weil et al. 2002) that can be more dangerous for people with disabilities 
 

88 

than for others (Iezzoni and O’Day 2006). Obesity can interfere with work, maintaining 

independence and participating in community activities. 

The dangers of smoking are also well established. People with disabilities have higher 

rates of smoking than the general public, yet doctors query people with disabilities 

less often about smoking and other risky behaviors (Iezzoni et al. 2001; Iezzoni and 

O’Day 2006). 

Health insurance coverage is linked to the quality of care individuals receive. For those 

without health insurance, chronic conditions are often neglected or poorly managed 

medically, further worsening disease and disability (Institute of Medicine 2004). 

People with and without disabilities are insured at similar rates, however, people with 

disabilities tend to rely more heavily on the public health insurance programs (Medicare 

and Medicaid). 

People with disabilities also report that affordability is a key component of quality health 

care, irrespective of whether they have insurance coverage, because their needs often 

outstrip the benefits allowed (Iezzoni and O’Day 2006). We therefore recommend an 

indicator comparing individuals above and below the federal poverty level who fail to get 

needed care because of cost. 

Respect between health care provider and patient is crucial to the strong and trusting 

relationship necessary for high quality health care. Doctors are often the gatekeepers 

who provide access to specialty care, prescriptions for adaptive equipment, and 

document eligibility for social and financial services. Failure to take time to listen to 

patients’ concerns can damage the relationship and lead to poor clinical outcomes 

(Iezzoni and O’Day 2006). Because people with disabilities tend to use the health care 

system frequently, subjective measures as to whether doctors show respect and listen 

to what they have to say may be an important indicator of quality health care. 
 

 

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Indicator 7: Obesity 

Exhibit 5.8: 

Obesity among Working-Age People, 2006 

Description: This is a bar graph showing that 38% of people with disabilities between ages 21–64 have body 

mass indices that classify them as obese, compared with 23% of people without a disability. 

Source: Authors’ tabulations of 2006 Behavioral Risk Factor Surveillance Survey. 
 

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Indicator 8: Smoking 

Exhibit 5.9: 

Percentage of Working-Age People Who Smoke Tobacco Daily 

Description: This is a bar graph showing that 23% of people with disabilities between ages 21–64 smoke 

tobacco at least once per day compared with 16% of people without disability. 

Source: Authors’ tabulations of 2006 Behavioral Risk Factor Surveillance Survey. 
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Indicator 9: Health Insurance Status 

Exhibit 5.10: 

Health Insurance Status, Working-Age People, 2005 

Description: This bar graph compares the percentage of people with and without disabilities, aged 21–64 

who have private health insurance, public health insurance, other health insurance, and are uninsured. 

People with disabilities are much less likely than people without disabilities to have private insurance 

(46% compared to 74%) and much more likely to have Medicare or Medicaid (33% compared to 4%). The 

two groups are similar in coverage by other insurance (5% and 3%) or being uninsured (17% and 19%). 

Note: The coverage categories are mutually exclusive: An individual with multiple sources of coverage 

is assigned to the earliest category. Thus, a person with both private and Medicare coverage would be 

assigned to the private category. This coding practice follows a convention in health care research that 

the order of the categories (as listed above) reflects in a general way the “quality” of the coverage. 

Source: Unpublished statistics generated by G. Hendershot, 2005 National Health Interview Survey. 
 

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Indicator 10: People Who Failed to Get Needed Care Because of Cost, by 

Poverty Status 

Exhibit 5.11: 

Percentage of Working-Age People Who Reported That They Failed to Get Needed 

Medical Care Because of Cost, by Poverty Status, 2005 

Description: This bar graph shows people with and without disabilities below and above the federal poverty 

level who failed to get needed care because of cost. Of those below the poverty level, 29% of people 

with disabilities said they failed to get care as compared with 14% of people without disabilities. The 

corresponding figures for those above the poverty level are 17% and 5%. 

Source: Unpublished statistics generated by G. Hendershot 2005 National Health Interview Survey. 
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Indicator 11: Patients Who Report That Doctors or Other Health Providers Always 

Show Respect for What They Have to Say 

Exhibit 5.12: 

Percentage of Patients Ages 18–64 Who Report That Doctors or Other Health 

Providers Always Show Respect for What They Have to Say 

Description: This is a bar chart comparing patients ages 18–64 who report that doctors always show respect 

for what they have to say, by disability status. The numbers are 57% for people with disabilities and 63% for 

people without disabilities. 

Source: Medical Expenditure Panel Survey 2004 reported in Healthy People 2010. 

Strengths, weaknesses, and alternatives 

The data are valid and reliable: Data from the Behavioral Risk Factor Surveillance 

Survey (BRFSS) and the National Health Interview Survey (NHIS) have adequate 

sample sizes, strong disability measures, and are reported in Healthy People 2010. 

Medical Expenditure Panel Survey (MEPS) data drawn from a nationally representative 

subsample of households that participated in the prior year’s National Health Interview 

Survey. (See Appendix C for a fuller description of these surveys.) 

Measures: The NHIS has three measures of lack of health insurance coverage: 

currently (uninsured at the time of interview), intermittent (uninsured at least part of the 
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12 months prior to interview), and long term (uninsured for more than a year at the time 

of interview). We chose the intermittent measure because the optimal situation is to 

have continuous coverage of the population. People who have only intermittent 

coverage are at risk for inconsistent and lower quality health care; those who do not 

currently have health care will be included in this measure. 

The MEPS is the predominant source of data on health care costs (total and out-ofpocket). However, the Agency for Health Care Research and Quality (AHRQ) does not 

include disability status as a subgroup characteristic in either its regularly produced 

tables or as an option in its extensive MEPS data retrieval system. Unlike the data for 

indicator 10 (doctors or other health providers always show respect for what patients 

have to say), which is aggregated and reported regularly by Healthy People 2010, no 

entity regularly reports health care costs for people with and without disabilities using 

data from the MEPS. The public use micro data are difficult to use and analyses of 

those data are beyond the scope of this project. 

4. Financial Status and Security 

Rationale: It is often said that, “money does not buy happiness.” But few would dispute 

that there is a relationship between an adequate income and quality of life. Poverty 

rates for people with disabilities are at least twice as high as for people without 

disabilities (StatsRRTC 2005). Poverty rates are high despite the fact that almost nine 

million working-age adults with disabilities receive income support from the Social 

Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs. 

The presence of a disability can affect the financial status of the entire household, not 

just the person with a disability. The poverty rate measure is based on household 

income. We recommend indicators comparing the household incomes of people with 

and without disabilities and the percentage of households below the poverty level. 
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Indicator 12: Median Household Income of Working-Age People 

Exhibit 5.13: 

Median Household Income of Working-Age People, 2005 

Description: This is a bar chart showing the median household income of people ages 21–64 with and 

without disabilities as $35,000 and $61,500, respectively. 

Source: 2005 American Community Survey data reported in 2005 StatsRRTC Disability Status reports. 
 

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Indicator 13: Poverty Status of Working-Age People 

Exhibit 5.14: 

Poverty Rate Among Working-Age People, 2005 

Description: This is a bar chart showing the poverty rates of people ages 21–64 with and without disabilities 

as 25% and 9%, respectively. 

Source: 2005 American Community Survey data reported in 2005 StatsRRTC Disability Status reports. 

Strengths, weaknesses, and alternatives 

The poverty rates reflect the official definition used to compute the federal poverty 

thresholds for families of various sizes and age composition. The official definition does 

not take into account the additional expenses many people with disabilities face, such 

as accessible housing or assistive technology (She and Livermore 2006). 

5. Leisure and Recreation and Personal Relationships 

Rationale: Focus group participants stressed the importance of participation in leisure 

and recreation activities, either as individuals on their own or with other members of 

their communities. However, there is little data on this topic that meets the criteria 

outlined in Section B above. The only relevant data we can identify is available from 

the NHIS. These data measure participation in leisure time physical activity. Because 
 

97 

physical activity is so important to an individual’s overall health, we propose the NHIS 

measure as one measure of recreation. 

Focus group participants stressed the importance of personal relationships in obtaining 

a high quality of life. We have selected two measures in this domain: marriage and 

obtaining needed social and emotional support. 

Focus group participants said they aspired to strong, close, emotionally supportive 

relationships with people with and without disabilities, or said these relationships were 

essential for their well-being. Many also aspired to getting married and raising children. 

A person with a disability who is in a committed relationship is more likely to get informal 

support that is limited or unavailable from formal government programs. Such support 

can be more acceptable to the person with a disability, delivered more conveniently and 

efficiently, and can cost less, than formal support. Additionally, couples can share 

household and other chores based upon their abilities, e.g., a person who has difficulty 

going outside the home can handle cooking and cleaning, leaving the shopping to the 

partner. Economies of scale can also be achieved by living together—sharing rent and 

food—that make living together more economical than living separately. 
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Indicator 14: Participate in Leisure Time Physical Activity 

Exhibit 5.15: 

Percentage of Working-Age People Who Participate in Leisure Time Physical 

Activity, age 21–64, 2005 

Description: This bar graph shows that 44% of people with disabilities participate in leisure time physical 

activities, as compared to 65% of people without disabilities. 

Source: Unpublished statistics generated by G. Hendershot 2005 National Health Interview Survey. 
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Indicator 15: Always or Usually Get the Social and Emotional Support You Need 

Exhibit 5.16: 

Percentage of Adults Who Report that They Always or Usually Get the Social and 

Emotional Support They Need, 2006 

Description: This bar chart shows that 66% of adults with disabilities and 77% of adults without disabilities 

report that they always or usually get the social support they need. 

Source: Author’s tabulations of 2006 Behavioral Risk Factor Surveillance Survey. 
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Indicator 16: Marital Status 

Exhibit 5.17: 

Marital Status of Working-Age Adults Ages 21–64 

Description: This bar chart compares individuals ages 21–64, with and without disabilities, who were 

never married, are now married, or are widowed/divorced/separated. People with disabilities are 

less likely to be currently married than people without disabilities (49% compared to 61%), more likely 

to be separated, divorced, or widowed (28% compared to 15%) and almost equally likely to be 

never married (23% compared to 24%). 

Source: Unpublished statistics generated by A. Houtenville using 2005 American Community Survey data. 

Strengths, weaknesses, and alternatives 

Participation in leisure time physical activity measures participation in activities 

such as exercise, sports or physically active hobbies. It is not a strong indicator of 

participation in a wide range of leisure and recreation activities that may not involve 

physical exertion. 

The marriage measure we have selected may not be a good proxy for strong personal 

relationships for two reasons: First, the strength of the spousal relationship varies 

among couples; some are strong and emotionally supportive and some are not. 
 

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Second, the marriage indicator does not reflect relationships of couples who provide 

each other with significant emotional support but are not married. This issue may be 

particularly significant among people with disabilities who may choose not to marry to 

avoid losing SSI benefits. For example, two individuals living on SSI will receive a 

lower payment as a married couple than their combined individual SSI payments. 

Individuals on SSI with Medicaid coverage are likely to lose these benefits if they marry 

a working spouse. 

6. Crime and Safety 

Rationale: Focus group participants mentioned personal safety as a pertinent 

dimension of several domains, including housing (living in a safe area), transportation 

(waiting for public transportation at night or in isolated areas), and personal assistance 

(being victimized by an assistant). 

The National Crime Victimization Survey, conducted by the Department of Justice, 

Bureau of Justice Statistics, has included a disability indicator similar to the ACS 

indicator on their National Crime Victim Survey, as of January 2007. Data on this 

indicator will be released in late 2008, based on the data collected in 2007. 

Indicator 17: Violent Crimes per 1,000 People With and Without Disabilities. 

(Violent crime is the sum of rape, robbery, simple and aggregated assault) 

Data Source: National Crime Victimization Survey. 

Indicator 18: Property Crimes per 1,000 People With and Without Disabilities. 

Data Source: National Crime Victimization Survey. 

Strengths, weaknesses, and alternatives 

The National Crime Victimization Survey has a large sample size and the new disability 

questions seem well designed. As a result, the survey has the potential to fill a gap in 

our knowledge of the prevalence of victimization among people with disabilities. 
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7. Domains for Which There Are No Indicators 

Our focus groups identified other domains, including community participation, political 

participation, housing, transportation, and technology. We were unable to identify data 

in these domains that met the criteria we outlined in Section B above. We briefly 

summarize the data limitations in each of these domains below. Appendix D contains a 

fuller description of available data and limitations. 

Community participation: The limited data we have on community participation is 

generally available from surveys that are conducted only sporadically or conducted by 

non-governmental entities such as NOD/Harris. 

Political participation: Most of the information we have on political participation of 

people with disabilities comes from private, non-governmental surveys such as the 

NOD/Harris survey and the Pew Research Center for the People and the Press. The 

CPS is the only large, ongoing national survey that includes questions about political 

participation. The CPS has a core survey and monthly supplemental surveys. Each 

year, the November supplement queries about recent voting behavior. A different 

supplemental survey (the March supplement) asks whether the respondent has a 

“health problem or disability which prevents them from working or which limits the kind 

or amount of work they can do.” This question from the March supplement is the only 

way to define disability in the CPS. In order to calculate the voting behavior of people 

with disabilities compared to those without disabilities, an analyst needs to merge the 

two supplements. However, because of the sampling frames, only about one-third of the 

people in the March Supplement are asked the question from the November 

supplement. Thus, reporting voting behavior using the CPS violates two of the criteria 

identified above. First, disability is defined based on work limitation and second, 

retrieving the data is not easy. Both issues can be addressed by including additional 

questions about disability on the CPS and administering those questions in the core 

survey rather than in a supplement. 
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Transportation: There is no ongoing measure of transportation use by people with 

disabilities or their perceptions of available transportation. The only source of 

information on this topic, the Department of Transportation Bureau of Transportation 

Statistics 2002 National Transportation Availability and Use Survey, has not 

been repeated. 

Housing: We considered using the ACS measure of the number of individuals with 

disabilities living in congregate care facilities as a proxy measure of integration. 

However, we do not believe the measure provides unambiguous information about 

quality of life. Although most would agree that living in a large facility is undesirable, 

smaller group homes, also defined as congregate care facilities, often provide high 

quality care and may be more desirable than other options, such as living with aging 

parents. In addition, living in a congregate care facility is an improvement over 

homelessness. We also considered the ACS measure of home ownership, but found it 

to be problematic. The survey asks if the respondent lives in an owner-occupied 

dwelling, which does not accurately measure home ownership. 

Technology: Every two years the CPS includes questions on one of the monthly 

supplements about computer ownership, internet access, and internet use. Using these 

data to track access to technology for people with disabilities has the same limitations 

as those noted above for voting behavior. 

In this chapter, we have proposed and illustrated 18 societal indicators spanning seven 

domains of importance to people with disabilities—employment, education, health and 

health care, financial security, leisure and recreation, personal relationships, and crime 

and safety. While one domain (leisure and recreation) had only one indicator, all others 

have at least two. Our illustration of each indicator used only one recent year of data. 

For the future, at least two time points would be shown for each indicator, providing 

evidence of trends in direction. 

The chapter also highlighted the strengths and weaknesses of the proposed measures; 

further discussion is provided in the Appendices to this report. Finally, we identified five 
important domains for which no adequate indicator can be proposed at this time. In 

each area, there is clear potential for development of one or more status indicators, 

given sufficient interest by policy-makers. 

From this promising beginning toward a comprehensive set of indicators to 

monitor the status of people with disabilities, we turn next to focus on Program 

Performance Indicators. 

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Chapter 6: Program Performance Indicators 

Program performance indicators, or indicators used for “performance measurement,” 

have a narrower purpose than the societal indicator systems we have been discussing. 

While topical and comprehensive indicator systems attempt to capture the state of 

society, program performance indicators are used by agencies, Congress, and OMB for 

ongoing monitoring and reporting of program accomplishments, particularly progress 

toward pre-established goals. 

Most current program performance indicators measure the effect of programs on 

participants. They generally do not measure the number of people who could benefit 

from the program but do not participate either because they do not meet specific 

eligibility requirements, are unaware that the program exists, or do not use the program 

because of other entry barriers such as inaccessibility or excessive red tape. There are 

a few exceptions. The food stamp program monitors the participation rates of eligible 

households, and the chronic disease prevention programs monitor the national rate of 

chronic diseases. 

A second limitation of program performance indicators is that they do not provide 

enough information to evaluate the impact of the program. They do not account for the 

complex interactions between the program and other factors such as the economy or 

other programs. For example, the percentage of vocational rehabilitation clients 

obtaining competitive jobs at closure partly depends on the quality of the services 

delivered, but also depends on the characteristics of the users, the availability of jobs in 

the economy, and the barriers and disincentives to work created by Social Security 

Disability Insurance and other cash and medical benefits. 

Because of the limitations of performance measures for evaluation purposes, many 

agencies conduct specific program evaluations to identify opportunities to improve the 

program, ascertain the extent of the program’s effectiveness, increase the public’s 

general knowledge about the program or topic, or guide decisions on resource 

allocation within the program (GAO 1998). Performance measurement focuses on 
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whether certain objectives have been achieved, but cannot determine the extent to 

which the program contributed to that achievement. 

Program evaluations typically use comparison groups and empirical methods to assess 

the “counterfactual”—the extent to which the objectives would be achieved in the 

absence of the program or a program feature. A full evaluation requires an examination 

of a broader range of information on program performance and program context, as well 

as a comparison or control group, or some other method to assess the counterfactual. 

Comparison of actual to counterfactual performance measures can play a central role in 

a program evaluation, but actual performance measures on their own generally do not 

provide enough information to assess the value of the program itself. Program 

evaluations are generally conducted sporadically because they are too expensive and 

technically demanding to conduct on a routine basis (GAO 2005). 

A. Existing Program Performance Measurement Systems 

The government uses two performance measurement systems: The Government 

Performance and Results Act of 1993 (GPRA) and the Office of Management and 

Budget’s Program Assessment Rating Tool (PART). GPRA mandates that each federal 

agency develop a strategic plan with outcome-related goals and objectives; develop 

annual performance plans with output-and outcome-related goals; and report annually 

on progress toward achievement of these. GPRA was criticized for allowing agencies to 

focus on outputs (the quantity of the product or service provided) rather than outcomes 

(the results of providing the service), which led OMB to insist on outcome measures 

for PART. 

PART assesses whether agencies focus upon achievable outcomes based upon longterm goals and benchmarks and mandates that agencies develop an improvement plan 

to address deficits. The PART process requires agencies to answer 26 questions about 

the program purpose and design, strategic planning, program management, and 

program results and to develop and report quantifiable indicators. Generally, agencies 

report between one and twelve outcome measures, several efficiency measures, and 
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occasionally several output measures. OMB makes these evaluations publicly available 

at http://www.whitehouse.gov/omb/expectmore/. 

GAO recently conducted a review of 200 federal programs located in 20 agencies that 

serve individuals with disabilities. About half of these programs serve only people with 

disabilities, while the rest have eligibility criteria other than disability (GAO 2005). 

Focusing on the outcome measures in the PART evaluations of 40 programs 

(Appendix F), half of which serve only people with disabilities and half of which serve 

people with disabilities within a broader population, we found that the two types of 

programs had significant limitations in how outcomes for people with disabilities were 

measured. 

Indicators for programs serving only people with disabilities: Outcomes of 

disability programs tend to be evaluated based on a narrow range of indicators that are 

generally inadequate to assess the true value of the program because they do not 

adequately capture the program’s impact on the quality of people’s lives. For example, 

employment and training programs use the following “job training common measures:” 

Entered Employment-Percentage employed in the first quarter after program exit. 

Retained Employment-Percentage of those employed in the first quarter after exit 

that was still employed in the second and third quarter after program exit. 

Increased Earnings-Percentage change in earnings: (i) pre-registration to postprogram; and (ii) first quarter after exit to third quarter. 

While these measures are a great improvement over simply recording whether a 

program’s client entered employment at one point in time, they are limited. The 

measures do not capture dimensions of employment that the focus groups identified as 

important, such as whether the job is appropriate to their aspirations and long term 

goals or is considered to be worthwhile; whether it uses their full talents and abilities; 

whether the wages are appropriate given their qualifications; the extent to which they 

are satisfied with job conditions (including place, facility, co-workers, schedule 
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requirements, accommodations, and opportunities for advancement); and whether they 

had meaningful opportunities to make choices about the conditions of their work. 

Education programs tend to focus on rates of retention, graduation, and subsequent 

employment. Although those measures are a reasonable proxy for the quality of 

education, they do not address the issue of choice or affordability. 

In other areas, the PART measures reflect quality of life (OMB 2004): 

Veterans Disability Compensation monitors “the percent of compensation recipients 

who perceive that VA compensation redresses the effect of service connected 

disability in diminishing the quality of life.” 

Veterans Pension measures “the percent of pension recipients who believe that 

the processing of their claim reflects the courtesy, compassion, and respect due to 

a veteran.” 

 Developmental Disabilities Grant Programs measure the percentage of individuals 

with developmental disabilities who are independent, self-sufficient and integrated 

into the community, as a result of State Council efforts. 

Federal Transit Administration—Formula Grant Programs measures accessibility— 

the percentage of bus fleets that are ADA compliant (lift-equipped, ramp-equipped, 

or low floor) and the percentage of key rail stations that are ADA compliant. 

While these measures do not directly quantify any of the quality of life measures 

identified in the focus groups, the first two measure the extent to which the client is 

being treated with dignity and the third measures integration, all of which were identified 

as important dimensions by the focus groups. 

One other program, the Assistive Technology Alternative Financing Program (AFP), has 

formally recognized the importance of measuring the program’s impact on quality of life. 

They have not yet established those measures, “...but a web-based outcomes reporting 

system is being developed through the AFP technical assistance grant. This system will 
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collect information to address the program’s purpose, including data on how AFP loans 

have helped transform the lives of people with disabilities in employment, education and 

independent living” (OMB 2004). Although this is a laudable goal, outcome indicators 

alone will be insufficient to establish the impact of the program on people’s lives. 

As described above, to do so requires some method for estimating the 

counterfactual (OMB2004). 

Indicators for programs that serve people with disabilities within a broader 

population: Outcome indicators tend to report the outcomes of all program enrollees 

rather than for different socio-demographic subgroups of enrollees. They do not allow a 

program to determine the specific impact on people with disabilities. While some 

means-test programs, such as Medicaid and the Food Stamp Program, have special 

eligibility categories for people with disabilities and monitor the enrollment of people in 

these categories, many programs do not include any measure of disability in their 

administrative records. For example, Temporary Assistance to Needy Families (TANF) 

does not track recipients with disabilities, even though there is extensive evidence that a 

large percentage of TANF families include parents and/or children with some disabilities 

(Zedlewski 1999; GAO 2002). Disability status might be an important determinant of 

TANF eligibility and enrollment. Disability status may also have an impact on ability to 

find work and transition out of the program. Although there have been non-agency 

efforts to look at disability prevalence among TANF recipients (Zedlewski 1999; GAO 

2002), our understanding of the experiences of people with disabilities in TANF is 

limited because state programs and the federal Agency for Children and Families do not 

routinely monitor this subpopulation. 

B. Integrating Quality of Life Concepts into Program 

 Performance Measures 

Current performance measures used for PART and GPRA do not address the 

dimensions identified by our focus groups such as choice, empowerment, and 

aspirations. However, there are several emerging initiatives that use some of these 

dimensions to monitor and improve the quality of providers and small programs. We 
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•	 

mention them here because they provide a model of the type of issues that could be 

included in program performance measurement. 

The most promising practice to integrate quality of life concepts into program 

performance measures is from the Centers for Medicare and Medicaid Services (CMS), 

in collaboration with the National Association of State Directors of Developmental 

Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI). 

CMS developed the HCBS Quality Framework, which focuses attention on outcomes of 

home and community-based services that CMS believes are important, such as personcentered planning and delivery; supporting participants in the exercise of their rights; 

and participant access to services. The framework is not regulatory; states have the 

option to implement it as they wish. 

 NASDDDS, in conjunction with HSRI, has converted these concepts into National Core 

Indicators (NCI). The current set of performance indicators includes approximately 100 

consumer, family, systemic, cost, and health and safety outcomes. Sources of 

information include consumer surveys (with questions addressing empowerment and 

choice issues) family surveys (with questions addressing satisfaction with supports), 

provider surveys (with questions addressing staff turnover), and state systems data 

(with questions addressing expenditures and mortality). Currently, 23 states and two 

sub-state developmental disability agencies are using the indicators. Using data from 

the consumer survey, the NCI coalition computes statistics for each state, which allows 

for a comparison among states (HSRI and NASDDS 2006). Outcome measures include 

the following: (A full list is shown in Appendix G.) 

The proportion of people who report that their service coordinators asked about 

their preferences; 

The proportion of people who have friends and caring relationships with people other 

than support staff and family members; 

The proportion of people who control their own budgets; 
 

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•	 

The proportion of people who report having been provided options about where to 

live and work; and 

The proportion of people who are able to see their families and friends when 

they want. 

The major barrier to using outcome measures of this type for program monitoring is that 

the only way to collect this type of information is through lengthy surveys with program 

participants, which is usually prohibitively expensive to do on a regular basis and could 

impose a significant burden on respondents. 

C. Conclusions and Recommendations 

Recommendation 4: Administrative records of all means-tested programs should 

include a disability indicator. Programs that serve individuals with disabilities, such as 

One-Stop Employment Centers and TANF, should collect data on the number of 

individuals with disabilities who use their programs and compare outcomes between 

program users with and without disabilities. We recommend that the Interagency 

Committee on Disability Research (ICDR) develop a workgroup to establish criteria on 

which the indicator is based. 

Recommendation 5: Expand the Job Training Common Indicators. NCD should ask 

the Department of Labor to explore options within its administrative data collection 

system to add questions to the Job Training Common Indicators that more adequately 

capture concepts important to the focus groups, including choice in job; whether the job 

uses the employee’s full talents and abilities; whether the wage is appropriate given 

their qualifications; the extent to which they are satisfied with job conditions (including 

place, facility, co-workers, schedule requirements, accommodations, and opportunities 

for advancement); and whether they have meaningful opportunities to make choices 

about the conditions of their work. 
Recommendation 6: Agencies should consider the effects of programs on nonparticipants. Agencies should include participation rates for eligible individuals (or 

potentially eligible individuals) and measures of well-being for those who are denied 

services in their GPRA and PART outcome measures. Improved survey data on people 

with disabilities would help support such measures. 

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Chapter 7: Conclusions and Recommendations 

This report describes what we know about the status of people with disabilities in our 

society and examines current data to ascertain whether it meaningfully measures their 

well-being. While much useful data on the status of people with disabilities exists, 

significant knowledge gaps hamper efforts to improve their well-being. Additionally, 

social indicator systems currently used or being developed do not provide specific 

information about people with disabilities; therefore, no comprehensive report exists on 

the status of people with disabilities. 

This report proposes a set of statistical indicators to annually measure the status of 

working-age people with disabilities, and compare them to working-age people without 

disabilities in the United States. The topical indicator set, which can be produced 

relatively quickly, can provide a foundation for the social indicator systems being 

developed and stimulate public awareness about the status of people with disabilities 

and the need for improvement. 

Recommendations fall into two categories: social indicators and program indicators. 

Social Indicators: Social indicator systems are one of the chief mechanisms for 

assessing group status in our society. Although social data exist on many important 

aspects of daily life, there is no comprehensive indicator system at the federal level that 

coherently describes our social condition. 

In 2003, the Government Accountability Office, in cooperation with the National 

Academies, began the Key National Indicators Initiative (KNII) to develop a 

comprehensive indicator system for the country as a whole. The goal of the initiative is 

to assess the progress of our nation in areas that are important to the citizenry. They 

are using the wealth of existing data from a variety of federal sources to develop a 

website with data on 30 “key” indicators and several hundred secondary indicators. 
Unfortunately, many of the surveys the KNII will use to collect social data do not contain 

adequate measures to define disability or meaningful measures for program outcomes. 

Some existing surveys probe deeply into certain life domains and are, in principle, 

useful in measuring the well-being of people with disabilities. But they are constrained 

by the conceptual and methodological limitations of their disability questions and do not 

probe into areas of life important to focus group participants. Existing social 

measurement systems generally do not include measures that would enable us to 

identify people with disabilities in a consistent and meaningful fashion, or evaluate their 

quality of life. Current data cannot support a complete, holistic set of indicators. This 

lack of data makes monitoring and evaluating the impact of laws, policies and programs 

on people with disabilities impossible, which in turn undermines our ability to make 

informed programmatic and funding decisions. 

Data on individuals with disabilities has various limitations that impact its usefulness in 

measuring quality of life. The definition of disability is quite complex and varies among 

different federal and state laws, public programs, insurance plans, and organization, 

which means that surveys do not all use the same definition. Some of the survey 

definitions are particularly problematic, most notably the “work limitation” definition. 

Answers are likely to be sensitive to characteristics of the economic or physical 

environment and are likely to differ among individuals with different circumstances and 

the same level of impairment. 

Another problem is that, although people from diverse racial or ethnic backgrounds 

constitute a disproportionate share of the disability community and sometimes have a 

unique set of needs, they are often not adequately represented in surveys. Many large 

surveys, where it is likely to be possible to describe this subpopulation statistically, do 

not cross-tabulate race-ethnicity with disability status. A final problem is that there are 

few surveys with the same question, the same disability indicators and the same 

sampling methodology across time that do not use the problematic work definition 

discussed above, so it is difficult to track progress over time. 

114 
Program Performance Indicators: Programs that focus on individuals with 

disabilities, as well as programs that serve individuals with disabilities within a broader 

population, have significant limitations in how outcomes for people with disabilities are 

measured. In programs serving a broader population, outcome indicators tend to 

report the outcomes of all program enrollees rather than of different demographic 

subsets of enrollees. Thus, they do not allow a program to determine the specific 

impact on people with disabilities. Outcome indicators for programs focusing on 

people with disabilities, particularly employment programs, are evaluated based on a 

narrow range of indicators that do not adequately capture the program’s impact on the 

quality of people’s lives. 

Recommendations: We make the following recommendations to NCD: 

Recommendation 1: NCD recommends that the National Institute on Disability 

and Rehabilitation Research (NIDRR) establish and fund a coalition of disability 

policy-makers and advocates to: 1) develop a fuller set of indicators that are 

important to people with disabilities, building on the indicators outlined in this 

report (see Chapter 5); and 2) ensure that disability is included as a subgroup 

characteristic as the KNII is developed. The KNII offers an important opportunity to 

integrate disability into a larger national indicator system. When completed, the KNII will 

offer individuals who are looking for disability data relatively easy access to the data. It 

will highlight the importance of including disability as a subgroup in analyzing the 

relative status and progress of the population and highlight gaps in data about people 

with disabilities. 

Recommendation 2: Promote a standard set of disability questions. Some 

important federal surveys have no disability measures. When measures are included, 

they vary across surveys, often yielding inconsistent and confusing results. A common 

core of disability questions on all federal surveys would improve comparability and 

improve the national discourse about disability programs and policy. 

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The definition should identify people “who, because of their functional limitations, are at 

risk for the loss or restriction of opportunities to take part in the normal life of the 

community on an equal level with others” (Altman 2006). Questions aiming to identify 

this group should characterize people by the difficulties they have in undertaking basic 

activities, like walking, seeing, and self-care—and not questions asking if they have a 

condition which limits their ability to participate in society, for example to work or attend 

school. The analysis can then determine to what extent people with functional 

limitations are excluded from society. It is also important that the questions ask about 

functioning without assistive devices, since the presence of assistive devices can assist 

people with functional limitations gain access to society. 

Based on ideas developed by the Washington City Group (Madans et al. 2004, Altman 

2006, Mont 2007) and Stapleton et al. (forthcoming), we propose that the set of 

questions used to operationalize this definition meet the following criteria: 

Be reliable and valid when self-reported; 

Include the smallest number of questions possible to capture the needed concepts; 

Be comparable across different national cultures; 

Focus on functional limitations; 

Not include the word “disability” because it can be interpreted differently based on 

age and other factors; 

Include scaled responses to allow the researcher to identify functioning at 

different levels; 

Identify the length of time the person has had the impairment; and 

Not preclude including other measures of disability for other purposes. 

Including a set of questions meeting these criteria on all national surveys will allow us to 

compare the well-being of people with and without disabilities in each of the domains 

covered by the surveys, and to monitor changes over time in response to changes in 

environmental factors such as the economy and public policy. It would also ensure that 
data available for the general population and reported for other socio-demographic 

groups is also available by disability status. A short common set of questions also would 

allow for comparisons across surveys. 

Recommendation 3: Fully disseminate disability data. Federal agencies and other 

organizations that conduct national surveys, such as the US Census Bureau of Labor 

Statistics and the U.S. Department of Health and Human Services Administration on 

Healthcare Research and Quality, should provide comparisons of people with and 

without disabilities in their aggregated data reports and should, where sufficient data 

exists, offer comparisons of people with disability by gender, race, and other sociodemographic characteristics. 

Recommendation 4: Administrative records of all means-tested programs should 

include a disability indicator. Programs that serve individuals with disabilities, such as 

One-Stop Employment Centers, and TANF, should collect data on the number of 

individuals with disabilities who use their programs and compare outcomes between 

program users with and without disabilities. We recommend that the Interagency 

Committee on Disability Research (ICDR) develop a workgroup to establish criteria on 

which the indicator is based. 

Recommendation 5: Expand the Job Training Common Indicators. NCD should ask 

the Department of Labor to explore options within its administrative data collection 

system to add questions to the Job Training Common Indicators that more adequately 

capture concepts important to the focus groups, including choice in job; whether the job 

uses the employee’s full talents and abilities; whether the wage is appropriate given 

their qualifications; the extent to which they are satisfied with job conditions (including 

place, facility, co-workers, schedule requirements, accommodations, and opportunities 

for advancement); and whether they have meaningful opportunities to make choices 

about the conditions of their work. 

Recommendation 6: Agencies should consider the effects of programs on nonparticipants. Agencies should include participation rates for eligible individuals (or 

117 
potentially eligible individuals) and measures of well-being for those who are denied 

services in their GPRA and PART outcome measures. Improved survey data on people 

with disabilities would help support such measures. 

118 
119 

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Appendix 

Mission of the National Council on Disability 

Overview and Purpose 

The National Council on Disability (NCD) is an independent federal agency with 15 

members appointed by the President of the United States and confirmed by the 

U.S. Senate. The purpose of NCD is to promote policies, programs, practices, and 

procedures that guarantee equal opportunity for all individuals with disabilities 

regardless of the nature or significance of the disability and to empower individuals 

with disabilities to achieve economic self-sufficiency, independent living, and inclusion 

and integration into all aspects of society. 

Specific Duties 

The current statutory mandate of NCD includes the following: 

Reviewing and evaluating, on a continuing basis, policies, programs, practices, and 

procedures concerning individuals with disabilities conducted or assisted by federal 

departments and agencies, including programs established or assisted under the 

Rehabilitation Act of 1973, as amended, or under the Developmental Disabilities 

Assistance and Bill of Rights Act, as well as all statutes and regulations pertaining 

to federal programs that assist such individuals with disabilities, to assess the 

effectiveness of such policies, programs, practices, procedures, statutes, and 

regulations in meeting the needs of individuals with disabilities. 

Reviewing and evaluating, on a continuing basis, new and emerging disability policy 

issues affecting individuals with disabilities in the Federal Government, at the state 

and local government levels, and in the private sector, including the need for and 

coordination of adult services, access to personal assistance services, school 

reform efforts and the impact of such efforts on individuals with disabilities, access 

to health care, and policies that act as disincentives for individuals to seek and 

retain employment. 
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Making recommendations to the President, Congress, the Secretary of Education, 

the director of the National Institute on Disability and Rehabilitation Research, and 

other officials of federal agencies about ways to better promote equal opportunity, 

economic self-sufficiency, independent living, and inclusion and integration into all 

aspects of society for Americans with disabilities. 

Providing Congress, on a continuing basis, with advice, recommendations, 

legislative proposals, and any additional information that NCD or Congress deems 

appropriate. 

Gathering information about the implementation, effectiveness, and impact of the 

Americans with Disabilities Act of 1990 (ADA) (42 U.S.C. § 12101 et seq.). 

Advising the President, Congress, the commissioner of the Rehabilitation Services 

Administration, the assistant secretary for Special Education and Rehabilitative 

Services within the Department of Education, and the director of the National 

Institute on Disability and Rehabilitation Research on the development of the 

programs to be carried out under the Rehabilitation Act of 1973, as amended. 

Providing advice to the commissioner of the Rehabilitation Services Administration 

with respect to the policies and conduct of the administration. 

Making recommendations to the director of the National Institute on Disability and 

Rehabilitation Research on ways to improve research, service, administration, and 

the collection, dissemination, and implementation of research findings affecting 

people with disabilities. 

Providing advice regarding priorities for the activities of the Interagency Disability 

Coordinating Council and reviewing the recommendations of this council for 

legislative and administrative changes to ensure that such recommendations are 

consistent with NCD’s purpose of promoting the full integration, independence, and 

productivity of individuals with disabilities. 

Preparing and submitting to the President and Congress an annual report titled 

National Disability Policy: A Progress Report. 
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International 

In 1995, NCD was designated by the Department of State to be the U.S. government’s 

official contact point for disability issues. Specifically, NCD interacts with the 

special rapporteur of the United Nations Commission for Social Development on 

disability matters. 

Consumers Served and Current Activities 

Although many government agencies deal with issues and programs affecting people 

with disabilities, NCD is the only federal agency charged with addressing, analyzing, 

and making recommendations on issues of public policy that affect people with 

disabilities regardless of age, disability type, perceived employment potential, economic 

need, specific functional ability, veteran status, or other individual circumstance. NCD 

recognizes its unique opportunity to facilitate independent living, community integration, 

and employment opportunities for people with disabilities by ensuring an informed and 

coordinated approach to addressing the concerns of people with disabilities and 

eliminating barriers to their active participation in community and family life. 

NCD plays a major role in developing disability policy in America. In fact, NCD originally 

proposed what eventually became ADA. NCD’s present list of key issues includes 

education, transportation, emergency preparedness, international disability rights, 

employment, foster youth with disabilities, vocational rehabilitation, livable communities, 

and crime victims with disabilities. 

Statutory History 

NCD was established in 1978 as an advisory board within the Department of Education 

(P.L. 95-602). The Rehabilitation Act Amendments of 1984 (P.L. 98-221) transformed 

NCD into an independent agency.