Top 10 Ways to Improve Survey Data on People with Disabilities

1. Top 10 Ways to Improve Survey Data on People with Disabilities Presentation to Participants of the Cornell StatsRRTC conference on: The Future of Disability Statistics:What We Know and Need to Know Presented by: David Stapleton Cornell University Institute for Policy Research October 6, 2006 Washington, DC

2. Top 10 Ways to Improve SurveyData on People with Disabilities

3. 10. Periodically conduct a national disability survey • The most important point: this is #10, not #1 • Periodic disability surveys are attractive because of the significant limitations of existing surveys with respect to disability data • The investment in fixing those limitations might have a much greater return than the investment in periodic national disability surveys • But even if we could address all other limitations, periodic national disability surveys would still have significant merit

4. 9. Improve sampling • Disproportionately large numbers of people with disabilities live in non-conventional housing • Institutional Group Quarters: nursing homes, prisons, mental hospitals, ICF/MRs, and others • Non-institutional Group Quarters: group homes for people with disabilities, short-term shelters, dormitories, military quarters, employee quarters, etc. • Some are homeless • National surveys need to clearly define the residence groups in their sampling frames, use well developed frames, and sample in a clear and consistent manner • Low on the list because the Census Bureau already maintains and manages such a national sampling frame • But there are problems that affect disability statistics • Exclusion of most homeless people • Lack of consistency across “non-institutional populations” captured in major surveys • 2006 ACS includes most institutional and non-institutional GQs, like the Decennial Census, but not all • Not available for non-federal surveys

5. 8. Improve locating/interview standards • Inclusion of people with disabilities and data quality depend substantially on • Mode of interview (mail, phone, or personal interviews) • Residence rules (usual vs. current residence) • Proxy versus self-respondent • Recall period (monthly, sub-annual, or annual) • Reference period (e.g., last calendar year vs. last 12 months) • And more …

6. 7. Add disability supplements • Good idea when: • a large amount of new information is required • there’s a need to study a specific subpopulation • a large national survey (ACS, CPS, or NHIS) can act as a screener and/or provide other information that will enhance the supplement • Efficient means of gathering a lot of information • NHIS-D is an example of a very large supplement • Challenges: • Cost, timing, and coordination issues

7. 6. Improve disability-relevant content • Small modifications to existing surveys such as additional disability-specific questions, probes, or response options • Pull disability services, resources, and concepts out of the ‘other’ bucket • Add questions about specific barriers to employment, reasons for not working, employer accommodations and job demands in the CPS • Add questions about attitudinal barriers and expectations about independence and self-sufficiency to SIPP or its successor • Challenge: additional questions can affect other items in the survey and comparisons with statistics from past surveys

8. 5. Survey poorly represented groups • Periodic surveys of all residents of group quarters • Currently there are intermittent surveys of nursing home residents, plus surveys of prison and jail inmates approximately every four years • Residents of other group quarters have not been surveyed routinely except in the Decennial Census, including • ACF/MRs • Long-term psychiatric facilities • Starting in 2006, the ACS includes almost all group quarters • But will researchers have sufficient access? • Periodic surveys of homeless people • Not fully represented in any major survey, including the Census and ACS • Program participants with disabilities • SSDI, SSI, Medicare, Medicaid, VR users, etc.

9. 4. Include disability measures in all surveys • Some important surveys have no disability measures • Consumer Expenditure Survey • Survey of Consumer Finances • American Housing Survey • American Public Opinion and U.S. Foreign Policy

10. 3. Improve collection of longitudinal data • The Survey of Income and Program Participation (SIPP) is scheduled for replacement by the Dynamics of Economic Well-being System (DEWS) • Cost issues • Quality issues • For people with disabilities in the non-institutional population, SIPP is the best current source for information on: • The dynamics of disability, income and program participation • Long-term economic well-being and long-term disability • DEWS is in the early development stage • Greater reliance on links to administrative data • Longitudinal features planned but unclear • Continuation and improvement of the Census longitudinal data collection program without significant interruption is imperative

11. 2. Link survey data to administrative data • Disproportionate numbers of people with disabilities participate in government programs • It is not possible to obtain accurate, consistent information about program participation from surveys • Linked survey - administrative data: • Address the issue of inaccurate reporting • Help address non-response bias • Add substantial detail on program benefits • Add a longitudinal dimension • Past links for SIPP, especially, are heavily used by disability researchers, and new NHIS and other links are welcome • Privacy and access are critical issues

12. 1. Establish core disability questions • A common core of disability questions would • Improve comparability across surveys • Improve the discourse about disability • The number of questions would have to be small, but • Some surveys would include additional questions to • Support the survey’s specific purposes • Support research on who is and is not identified by the common core questions

13. Top 10 Ways to Improve SurveyData on People with Disabilities #1. Establish core disability questions #2. Link survey data to administrative data #3. Improve collection of longitudinal data #4. Include disability questions in all surveys #5. Survey poorly represented groups #6. Add disability relevant content #7. Add disability supplements #8. Improve interview and locating standards #9. Improve sampling standards #10. Periodically conduct a national disability survey

14. Social inclusion requires survey inclusion • Most national surveys are designed to address “mainstream” issues • Surveys marginalize people with disabilities, because they are more likely than others to: • live in non-conventional settings; • be hard to locate; • be difficult to interview; and • have characteristics, needs and interests that are not “mainstream” • Greater “social inclusion” of people with disabilities requires improvement in the quality of disability statistics

15. A national disability surveyshould be the last resort • There will always be a residual need for periodic national disability surveys, but • The cost is high • Reaching agreement on content is problematic • Many other improvements to collection of national survey data on disability have a greater return relative to their cost • Other improvements would make it more practical to field a periodic national disability survey

16. Common Core Disability QuestionsShould be the Top Priority • Widely understood • E.g. “Include in the core of all relevant Healthy People 2010 surveillance instruments a standardized set of question that identify “people with disabilities.” • Objective 6.1 of Healthy People 2010 • Ambiguity about the definition of “disability” has thwarted disability statistics, research and policy analysis • "When you cannot measure, your knowledge is meager and unsatisfactory." Lord Kelvin • “If you want to count, you need to be counted.”

17. Common Core Disability QuestionsShould be the Top Priority • Progress is stymied only by disagreement on “how” • Disability concept • Objectives • Do we need an OMB mandate? • “Perfect is the enemy of the good.”

18. Common Core Disability QuestionsShould be the Top Priority • Healthy People 2010: “Disability is a demographic descriptor rather than a health outcome.” Disability and Secondary Conditions, Focus Area 6, Reports and Proceedings, 2003 • We need a demographic descriptor for people with significant long-term physical or mental impairments that put them “at-risk” for activity restrictions and participation limitations • But “disability” is not a demographic characteristic • Demographic characteristics are personal characteristics • Disability is the outcome of an interaction between personal characteristics and the environment

19. Common Core Disability QuestionsShould be the Top Priority • We need a name for this population group • People At Risk Due to Impairments (PARDI) • ? • If we identify those “at-risk,” we can assess the extent to which their activities and participation are restricted • We would be able to count both: • Those at-risk for disability • Those at-risk who actually experience disability