1. Cornell University Institute for Policy Research What We Dont Know About People with Disabilities Presentation to Participants of the: The Future of Disability Statistics: What We Know and Need to Know Presented by: Gina Livermore Cornell University Institute for Policy Research October 6, 2006 Washington, DC

2. Cornell University Institute for Policy Research Purpose Cornell StatsRRTC project on options for enhancing survey data on people with disabilities –Describe existing national disability data system –Identify important gaps and limitation of existing data –Propose a variety of options for improving survey data Presentation will focus on findings and opinions related to the first two points above.

3. Cornell University Institute for Policy Research Sources of Information Interviews with about 40 disability data users from federal and state agencies, disability consumer organizations, and university and contract research organizations How and why data users needed/used disability data Views on disability data gaps and limitations Scan of about 40 national surveys to assess: Populations covered Geographic level of estimates Frequency and timing Health and disability indicators Subject areas covered for people with disabilities

4. Cornell University Institute for Policy Research Current National Disability Data System Federal government collects extensive data pertaining to disability that collectively, comprise a national disability data system, although these data are not managed or recognized as such. Disability-related data are available to varying degrees in: –Major national household surveys –Smaller national household surveys on specific topics –Surveys of non-household populations –Surveys of subpopulations –Program administrative data

5. Cornell University Institute for Policy Research Major National Household Surveys Provide regular information about population demographics, health, economic well-being, and productivity, with a focus on the household population Census, ACS, NHIS, CPS, NHANES, SIPP, PSID Implemented by federal agencies whose primary missions are to conduct statistical activities Census, Bureau of Labor Statistics, National Center for Health Statistics, National Center for Education Statistics All contain some information to identify people with disabilities, but measures vary markedly across surveys.

6. Cornell University Institute for Policy Research Smaller National Surveys on Specific Topics Provide regular and more detailed information on specific aspects of population well-being, activities, and attitudes ATUS, GSS, MEPS, NCVS, NHES, NHSDA Smaller than the major national surveys –In some cases, samples are derived from one of the major surveys Except for those focused on health issues, these surveys include few measures of disability –Several have no measures of disability: AHS, CES, APO

7. Cornell University Institute for Policy Research Surveys of Non-Household Populations Provide information about individuals living in institutions (nursing homes, jails, prisons) and homeless individuals NNHS, SILJ, SISCF, SIFCF, NSHAPC People with disabilities represent a large share of these populations These surveys are implemented rather infrequently

8. Cornell University Institute for Policy Research Surveys of Subpopulations Focus on specific groups: kids, students, elderly, program participants Large number and variety implemented for many different purposes HRS, LSVRS, MCBS, NSV, NHIS-D, NLTCS, NBS, NLTS-2 Generally conducted infrequently, or only once HRS and MCBS are notable exceptions A large number of these contain extensive disability- related information and/or are focused specifically on populations with disabilities

9. Cornell University Institute for Policy Research Program Administrative Data Programs where eligibility is related to disability –SSI, SSDI, Medicare, Medicaid, state vocational rehabilitation, special education, state mental health services Other programs where people with disabilities represent a large share of participants –TANF, food stamps, workforce development system May or may not be able to identify people with disabilities in these programs

10. Cornell University Institute for Policy Research Survey Data Limitations How disability is measured –Lack of any indicators in some national surveys –Psychiatric disabilities are poorly measured –Indicators are inconsistent across surveys Inability to identify a target population and link information across surveys Undermines perceived legitimacy of the data –Indicators are inadequate/too inflexible for many purposes Diagnoses and specific health conditions Functioning and interactions with the environment Eligibility for services and program participation Self and societal perceptions

11. Cornell University Institute for Policy Research Health and Disability Measures in Selected National Surveys

12. Cornell University Institute for Policy Research Survey Data Limitations (continued) Small sample sizes –Inability to analyze specific subgroups of people with disabilities Specific conditions or types of disabilities State or substate-level estimates Program evaluation/cost-effectiveness Entries and exits Subpopulations not captured well –People with intellectual disabilities –Small group homes/non-institutional residential settings –Homeless individuals

13. Cornell University Institute for Policy Research Survey Data Limitations (continued) Subject areas not adequately addressed –Characteristics of disability onset, severity, and chronicity –Environmental aspects of disability/community accessibility –Living arrangements, long-term care, caregiving –Interpersonal relationships and community participation –Assistive technology use, needs, costs, and impacts on functioning –Individual perspectives (experiences, perceptions of barriers, needs, expectations) –How people with disabilities spend their time and money –Workplace environment, job characteristics –Employment services and supports –Transportation

14. Cornell University Institute for Policy Research Survey Data Limitations (continued) Timing issues –Surveys conducted infrequently –Long time lags between data collection and release –Lack of life path or longitudinal data Limited access to administrative data –Links between survey and program data not often undertaken, but would improve quality of survey data People dont always know what programs they are in or the differences between SSI and SSDI, and Medicare and Medicaid –Data sharing agreements to access to program data are difficult to obtain

15. Cornell University Institute for Policy Research Why Do We Need Better Disability Data? Physical, cognitive, and emotional functioning are important, fundamental human characteristics National surveys focus on measuring the health, economic well- being, productivity, and needs of the population. Disability is an important determinant and/or consequence of all of these. We may pay for our ignorance in the future A large and growing share of the population is affected by disability. Disability is very costly to society and has wide ranging effects. The means to reduce the effects of disability have never been more available. Must have adequate data to understand trends, develop informed policies, monitor progress, and make arguments for change.

16. Cornell University Institute for Policy Research Concluding Remarks There is a lot of survey data on people with disabilities that is being used in many ways for a multitude of purposes. There are many significant limitations to existing data. Need to find practical and effective ways to address important limitations of these data to meet information needs and inform future policy.