What We Don’t Know About People with Disabilities

1. What We Don’t 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. Health and Disability Measures in Selected National Surveys

12. 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. 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. 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 don’t 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. 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. 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.