Disability Data in the American Community Survey

1. Disability Data in the American Community Survey Presentation for the 2006 State-of-the-Science Conference - The Future of Disability Statistics: What We Know and Need to Know Sharon M. Stern Poverty and Health Statistics Branch U.S. Census Bureau October 5, 2006

2. Overview • What is the American Community Survey (ACS)? • ACS Operations • Current disability items • 2006 ACS Content Test • How content for test was developed • Review of test operations • Selection criteria • Update on SIPP and DEWS

3. What is the American Community Survey (ACS)? • The ACS is a nationwide survey designed to provide communities a fresh look at how they are changing. • The ACS provides a statistical snapshot of the community

4. How is ACS household data collected? Surveys are mailed every month to a systematic sample of addresses in each county If a household does not respond in six weeks, Census Bureau staff will attempt to contact the respondent by telephone to complete the survey. If that, too, fails, a differential sample of remaining addresses will be visited by Census Bureau staff for an in person interview.

5. Response Rates By Mode http://www.brookings.edu/metro/umi/events/20060623_Waite.pdf

6. Group Quarters in ACSImplemented in 2006 • Questionnaires, introductory letter, FAQ’s … http://www.census.gov/acs/www/SBasics/GQ/index.htm • Technical Paper – housing units and group quarters… http://www.census.gov/acs/www/Downloads/tp67.pdf

7. ACS – Paper Form – Disability Items Top of page 8 Bottom of page 7

8. ACS Interagency CommitteeSubcommittee for the Disability Questions • Under the auspices of Office of Management and Budget • Chaired by the National Center for Health Statistics • Prepared recommendations for the ACS 2006 Content Test • Reviewed the legislative need for the data • Determined the main purposes of the data • Focused on meeting the needs given constraints • Conducted cognitive testing on questions

9. Federal Agencies Reviewed for Statutory and/or Programmatic Requirements for Disability Data • Examples: • Department of Commerce – Telecommunications Act of 1996 • Department of Education – National Education Reform • Administration on Aging – Older Americans Act • Department of Housing and Urban Development – National Affordable Housing Act • Department of Transportation – Mass transportation Elderly and Persons with Disabilities Program

10. Federal Agencies Reviewed for Statutory and/or Programmatic Requirements for Disability Data - Findings • Examples: • Agencies focus on individuals with limitations in functioning who are more likely to experience a limitation in participation as well. • Agencies use the data for two purposes. • Distribution of benefits, such as SSDI Insurance or Veteran health benefits • Provision of opportunities such as access to education, housing, and communication.

11. Definition of Disability Adapted by the Subcommittee • Based on orientation of agency mandates and using IOM Model of Disability and ICF Model of Functioning and Disability (WHO) • Disability - the restriction in participation that results from a lack of fit between the individual’s functional limitations and the characteristics of the physical and social environment. • Measuring disability then means analyzing the component concepts that make up the process.

12. Purpose of Disability Measure Recognized by the Subcommittee • Equalization of opportunity - identify those who, without accommodation, are likely to experience restrictions in participation due to limitations in functioning • Identify the population needing assistance to maintain independence

13. Basis of questions chosen for cognitive testing • Domains of functioning that identify the largest component of the population with disabilities • Vision • Hearing • Mobility (walking, climbing stairs) • Cognitive functioning • Monitoring independent living • Self-care activities (bathing, dressing) • Ability to move about the community without help • Limitation in kind or amount of work • Included for testing based on its previous use in the Census and assumptions of its ability to capture persons with mental health related limitations

14. Cognitive Testing • “Report of Cognitive Research on Proposed American Community Survey Disability Questions” by Kristen Miller of the National Center for Health Statistics and Theresa DeMaio of U.S. Census Bureau • http://www.census.gov/srd/papers/pdf/ssm2006-06.pdf • Five rounds of testing between June 2004 and February 2005 • Testing at NCHS • face-to-face and telephone interviews • Testing at Census • paper questionnaires • Several wordings for each domain

15. Cognitive Testing – Goals • Identify respondent interpretations • Identify potential response errors • Improve test questions • Investigate question performance within the context of three ACS modes: self-administered paper, telephone interview, in-person interview

16. Cognitive Testing – Recurring Themes • Regardless of the type of question, respondents have an internal calculation of whether a condition or limitation is “severe enough” to report • Some people report limitation status with assistance other report status without assistance • Mode tended not to impact respondent’s interpretation

17. Recommendations • 16 a. Is this person deaf or does he/she have serious difficulty hearing? • b. Is this person blind or does he/she have serious difficulty seeing even when wearing glasses? • F) Answer question 17a if this person is 5 years old or over. Otherwise skip to the questions for Person 2 on page 12. • 17 a. Because of a physical, mental, or emotional condition, does this person have serious difficulty concentrating, remembering, or making decisions? • b. Does this person have serious difficulty walking or climbing stairs? • c. Does this person have difficulty dressing or bathing? • G) Answer questions 18 if this person is 15 years old or over. Otherwise skip to the questions for Person 2 on page 12. • 18. Because of a physical, mental, or emotional condition, does this person have difficulty doing errands alone such as visiting a doctor's office or shopping?

18. 2006 ACS Content Test • A variety of objectives for testing • Content: e.g.. disability and health insurance • Form layout: e.g.. horizontal v. vertical roster • Two versions of disability items • Control: ACS current production questions • Test: Recommendation from interagency work group • Research Questions • Does the new set have more consistent reporting? • Does the new set have improved item response? • Where do these people’s disabilities fall on a spectrum of difficulty with specific activities?

19. How was the ACS Content Test data collected? Surveys were mailed to a sample of addresses. If no mail response was received, Census Bureau staff will attempt to contact the address in person to complete the survey. All respondents were part of a content follow-up conducted by telephone.

20. Control • (ACS Current Production) • Test • (Interagency Recommendation) • Label • Item # • Label • Item # • Sensory Disability • 16a • Hearing Disability • 16a • Seeing Disability • 16b • Physical Disability • 16b • Mobility Disability • 17b • Mental Disability • 17a • Cognitive Disability • 17a • Self-care Disability • 17b • Self-care Disability • 17c • Go-outside-home Disability • 18a • Independent-living Disability • 18 • Employment Disability • 18b • ---------- • ---------- Summary of Disability Topics

21. Summary of How “Test” Differs from “Control”– Part 1 • The hearing and vision concepts are separate questions in the test version • The hearing and vision questions on the test version include children under 5 years old, since the skip instruction was after these items. • The vision question includes the qualifier “even when wearing glasses.” • The hearing, vision, and mobility questions are simpler, omitting key terms/phrases of “long-lasting condition” and “impairment.”

22. Summary of How “Test” Differs from “Control”– Part 2 • The phrase “Does this person have [serious] difficulty” is included in the test version before each function or activity. • The test does not use terms like “substantially limits” or “long-lasting” or “lasting 6 months or more” • The test set does not include a work disability item. Please see the information sheet for more details.

23. Selection Criteria • Is the reliability for the test version equal to or better than the control? • For example, is the reliability for the vision and hearing questions in the test version equal to or better than the vision and hearing question in the control version? • Adjusted Simple Response Variance • Are the item nonresponse rates for the test version less than or equal to that of the control?

24. SIPP General Information: http://www.sipp.census.gov/sipp/ Topical Modules Functional Limitations and Disability, June to September 2005 Panels 1984 - 2004 http://www.sipp.census.gov/sipp/top_mod/top_mods_chart.html DEWS http://www.sipp.census.gov/sipp/ dews.html Reengineering the SIPP - PDF presentation by David Johnson, Chief, HHES at the U.S. Census Bureau Reengineering the SIPP: Brookings/Census Roundtable (MS Word document) August 24, 2006 Stakeholder Presentation Presentation Stakeholder matrix Survey of Income and Program Participation – Dynamics of Economic Well Being System

25. Contacts • Sharon M. Stern • 301-763-5638 • sharon.m.stern@census.gov • Matthew Brault • 301-763-5637 • matthew.w.brault@census.gov