Disability Datasets

Disability in public health data

CDC is working to ensure that people with disabilities are included in public health data. This involves addressing multiple areas where people with disabilities are not represented, or are underrepresented, in public health data collection. These data are essential for informing public health actions, addressing health disparities, and enhancing quality of life for people with disabilities across the lifespan.

People with disabilities experience disability in different ways, and how it is measured will result in different estimates of prevalence. Current estimates of disability prevalence from different data sources range from 8% to over 30% of the population, depending on how disability is defined. Even when the Census Bureau's American Community Survey (ACS) and CDC's Behavioral Risk Factor Surveillance System (BRFSS) use the same question set, known as the ACS-6, differences in data collection methods—such as sampling, weighting methods, modes of survey administration, and response rates—produce different prevalence estimates. The most recent estimate from ACS is 13.4% (Census, 2022) and the most recent from BRFSS is 28.7% (Disability and Health Data System, 2022). CDC is collaborating with partners to continue to improve disability representation in public health data.

Resource:

ICDR | Disability Data (acl.gov)

Population surveys that include the standard disability questions

In accordance with the 2010 Affordable Care Act, Section 4302, the Secretary of the U.S. Department of Health and Human Services (HHS) established data collection standards for five demographic categories by issuing the HHS Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status (10/31/2011). According to the guidance, "The six-item set of questions used in the American Community Survey (ACS) and other major surveys to gauge disability is the data standard for survey questions on disability. This set of six disability questions represents a minimum standard, and the questions and answer categories should not be changed. Additional questions on disability may be added to any survey as long as these six questions are included. If the ACS changes the disability questions in the future, the U.S. Department of Health and Human Services will revisit the standard and adjust the survey questions as necessary."

The six disability questions are

1. Are you deaf, or do you have serious difficulty hearing?
   1. ____ Yes
   2. ____ No
2. Are you blind, or do you have serious difficulty seeing, even when wearing glasses?
   1. ____ Yes
   2. ____ No
3. Because of a physical, mental, or emotional condition, do you have serious difficulty concentrating, remembering, or making decisions? (5 years old or older)
   1. ____ Yes
   2. ____ No
4. Do you have serious difficulty walking or climbing stairs? (5 years old or older)
   1. ____ Yes
   2. ____ No
5. Do you have difficulty dressing or bathing? (5 years old or older)
   1. ____ Yes
   2. ____ No
6. Because of a physical, mental, or emotional condition, do you have difficulty doing errands alone such as visiting a doctor's office or shopping? (15 years old or older)
   1. ____ Yes
   2. ____ No

Since the establishment of these data collection standards, the six-item set of disability questions has been included in several population surveys to assess health status of people with disabilities. A standardized data collection allows for comparison of people with and without disabilities in relation to a number of demographic, health, and social characteristics. Such standardized data collection can help to:

• Identify areas of health that need improvement through program efforts.
• Understand the health risks experienced by people with disabilities.
• Inform programs about including people with disabilities.

Identified population surveys containing the six standard disability questions

NOTE: The surveys briefly described below have included these six disability questions; there may be other population surveys that include the six questions. Each survey description below includes the year(s) in which these questions appeared in the questionnaires posted online, as of November 2018. Public datasets are generally released for these surveys; please go to the main website for each (using the hyperlink attached to each survey below) to contact the sponsor for release dates.

U.S. Department of Health and Human Services

Behavioral Risk Factor Surveillance System

The Behavioral Risk Factor Surveillance System (BRFSS) is a state-level telephone survey that tracks health risk behaviors of adults aged 18 years or older. BRFSS is conducted annually by the 50 states, the District of Columbia, and three U.S. territories (Guam, Puerto Rico, and the U.S. Virgin Islands) and is sponsored by the National Center for Chronic Disease Prevention and Health Promotion. The 2016, 2017, and 2018 surveys contain the six disability questions.

Health Information National Trends Survey

The Health Information National Trends Survey (HINTS) collects information about how people use cancer-related information. The data collected are used to improve the way health information is communicated to the public. Conducted every two years, HINTS is sponsored by the National Cancer Institute. The 2012 and 2013 surveys contain the six disability questions.

Medical Expenditure Panel Survey

The Medical Expenditure Panel Survey (MEPS) is an ongoing large-scale national survey of families and individuals, their medical providers, and employers to assess the cost and use of health care and health insurance coverage across the United States. MEPS has two major data collection components: the Household Component (HC), which is given to individual household members and their medical providers, and the Insurance Component (IC), which asks employers about health insurance plans. MEPS is sponsored by the Agency for Healthcare Research and Quality's Center for Financing, Access, and Cost Trends. The six disability questions were administered as part of the HC for the 2012, 2013, 2014, 2015, and 2016 surveys.

National Health and Aging Trends Study

The National Health and Aging Trends Study (NHATS) is a survey of Medicare beneficiaries aged 65 years or older about functioning and underlying capacity, living arrangements and social support, economic status and well-being, environmental factors and quality of life. Information collected is used to guide efforts to reduce disability and dependency, maximize health and independent functioning, and enhance quality of life among those at older ages. Conducted annually, NHATS is sponsored by the National Institute on Aging. The 2012 survey (Round 2), 2013 (Round 3), 2014 (Round 4), 2015 (Round 5), and 2016 (Round 7) surveys contain the six disability questions.

National Health and Nutrition Examination Survey

The National Health and Nutrition Examination Survey (NHANES) is an ongoing survey of adults and children that uses face-to-face interviews and physical examinations to assess health status. The interviews consist of questions about demographics (e.g., age, race, ethnicity, and disability status), socioeconomic status, and health-status measures. The physical examination consists of medical, dental, and physiological measurements, as well as laboratory tests administered by highly trained medical personnel. This survey is sponsored by CDC's National Center for Health Statistics (NCHS). The data are released in 2-year cycles. The 2013–2014, 2015–2016 and 2017–2018 surveys contain the six disability questions.

National Health Interview Survey

The National Health Interview Survey (NHIS) is a household survey of children and adults. Through personal interviews, NHIS collects information on a broad range of health topics, including health insurance, doctor's office visits, physical activity and other health behaviors. The information collected is used to track the health status of U.S. populations, healthcare access in the United States, and progress toward achieving national health objectives. Conducted annually, NHIS is sponsored by CDC's NCHS. The 2008, 2009, and 2010 surveys contain the six disability questions in the core of the instrument. The six questions were administered to a subset of the adult sample in 2011, 2012, 2013, 2014, 2015, 2016, and 2017 surveys.

National HIV Behavioral Surveillance Survey

The National HIV Behavioral Surveillance Survey (NHBS) is a survey of people at high risk for HIV infection. The survey examines behavioral risk factors for HIV (e.g. sexual behaviors, drug use), HIV testing behaviors, the receipt of prevention services, and use of prevention strategies (e.g. condoms, and pre-exposure prophylaxis). In addition to the interview, all NHBS participants are offered an HIV test. Conducted in rotating annual cycles, NHBS is sponsored by CDC's National Center for HIV/AIDS, Viral Hepatitis, Sexual Transmitted Diseases, and Tuberculosis Prevention. The 2014–2016 and 2017–2019 surveys contain the six disability questions.

National Survey of Children's Health

The National Survey of Children's Health (NSCH) is a survey that examines the physical and emotional health of children aged 0 to 17 years. Special emphasis is placed on factors that may relate to well-being of children, such as having a medical home, parental health, positive family interactions, school and after-school experiences, and safe neighborhoods. This survey is sponsored by the Health Resources & Services Administration's Maternal and Child Health Bureau and is conducted annually. The 2016, 2017, and 2018 surveys contain the six disability questions.

National Survey of the Diagnosis and Treatment of ADHD and Tourette Syndrome

The National Survey of the Diagnosis and Treatment of ADHD and Tourette Syndrome (NS-DATA) was a one-time follow-up survey to the 2011–2012 NSCH, conducted to assess children aged 2–15 years who had been diagnosed with attention-deficit/hyperactivity disorder (ADHD) and/or Tourette syndrome (TS). Through this survey, parents and guardians were asked about

• The emergence of symptoms.
• The context of the original diagnosis.
• The provider(s) who made the diagnosis.
• The child's current diagnostic status.
• The child's current symptoms and level of impairment.
• The types of clinical treatments/interventions and educational services the child receives.

NS-DATA was sponsored by CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) and NCHS.

National Survey of Family Growth

The National Survey of Family Growth (NSFG) is a survey of men and women aged 15 up to 49. In-person interviews are conducted at home to gather information about

• Family life.
• Marriage and divorce.
• Pregnancy.
• Infertility.
• Use of contraception.
• Health status.

The information on families, fertility, and health is used to help plan health services and health education programs. Conducted continuously, the NSFG is sponsored by CDC's NCHS. The 2011–2013, 2013–2015, and 2015–2017 surveys contain the six disability questions.

National Survey of Drug Use and Health

The National Survey of Drug Use and Health (NSDUH) looks at U.S. residents older than 12 years of age. In-person interviews are conducted at home to gather information about

• Substance use (prescription and illegal drugs, alcohol, and tobacco).
• Health conditions.
• Treatments.
• Other health-related factors.

The data provide estimates at the national, state, and sub-state level to help plan health services and health education programs. Conducted annually, the NSDUH is sponsored by the Substance Abuse and Mental Health Services Administration's (SAMHSA) Center for Behavioral Statistics and Quality. The 2015, 2016, and 2017 surveys contain the six disability questions.

U.S. Census Bureau

American Community Survey

The American Community Survey (ACS) is an ongoing national survey of households in the United States. It provides demographic, socioeconomic, and housing information about communities in the years between each 10-year Census. This survey is sponsored by the U.S. Census Bureau. The six disability questions have been included in the survey since 2008.

Survey of Income and Program Participation

The Survey of Income and Program Participation (SIPP) is an ongoing national household survey that collects information from the same group of people every 3 to 5 years. SIPP measures changes in many topics, including

• Economic well-being.
• Family dynamics.
• Education.
• Assets.
• Health insurance.
• Child care.
• Food security.

During each interview or "wave," supplemental questionnaires or "topical modules (TM)" touch on different topics. This survey is sponsored by the U.S. Census Bureau. The 2008 survey contains the six disability questions.

U.S. Department of Education

National Postsecondary Student Aid Study

The National Postsecondary Student Aid Study (NPSAS) is a nationally representative survey of postsecondary education students. The survey examines the characteristics of students, the percentages of students receiving various types of financial aid, as well as the average amount of financial aid received, by type of institution attended, attendance pattern, dependency status, and income level. This information is used to analyze student financial aid and to inform public policy on programs such as Pell grants and Direct/Stafford loans. Conducted every 4 years, this survey is sponsored by the Institute of Education Sciences' National Center for Education Statistics. The 2016 (NPSAS-16) survey contains the six disability questions.

U.S. Department of Labor

Current Population Survey

The Current Population Survey (CPS) is a monthly survey of about 50,000 households, including individuals aged 16 years or older, classified by

• Age.
• Sex.
• Race.
• Ethnicity.
• Educational attainment.
• Marital status.
• Veteran status.
• Disability status.

It provides a comprehensive body of information on the labor force, including

• Employment.
• Unemployment.
• Persons not in the labor force.
• Hours of work.
• Earnings.
• Other demographic and labor force characteristics, including
  • Job tenure.
  • School enrollment of workers.
  • Volunteering.

The CPS is sponsored by the U.S. Department of Labor's Bureau of Labor Statistics. The six disability questions have been included in the CPS since 2008.

U.S. Department of Housing and Urban Development

American Housing Survey

The American Housing Survey (AHS) is a national household survey that collects information on housing subjects, including

• Size and composition of the nation's housing inventory.
• Vacancies.
• Fuel usage.
• Physical condition of housing units.
• Characteristics of occupants.
• Equipment breakdowns.
• Home improvements.
• Mortgages and other housing costs.
• People eligible for and beneficiaries of subsidized housing.
• Home values.
• Characteristics of recent movers.

The data are used to assess housing needs. Conducted every two years, the AHS is sponsored by the U.S. Department of Housing and Urban Development. The 2009, 2011, 2013, 2015, and 2017 surveys contain the six disability questions.

U.S. Department of Justice

National Crime Victimization Survey

The National Crime Victimization Survey (NCVS) collects information about the frequency, characteristics, and consequences of criminal victimization in the United States. About 90,000 households, including nearly 160,000 persons aged 12 years or older, are interviewed twice during the year. The data are used to estimate the likelihood of victimization by sexual assault or rape, robbery, simple and aggravated assault, theft, household burglary, and motor vehicle theft. Conducted annually, the NCVS is sponsored by the U.S. Department of Justice's Bureau of Justice Statistics. The 2008, 2009-2011, 2012-2014, 2015, and 2016 surveys contain the six disability questions.