Issues in Disability Measurement A Comparison of Survey

Issues in Disability Measurement: A Comparison of Survey Methods Vidya Sundar, Ph. D, OTR/L Assistant Professor of Occupational Therapy Andrew J. Houtenville, Ph. D Associate Professor of Economics Kimberly G. Phillips, MA, Ph. D Project Director University of New Hampshire 1© 2014 University of New Hampshire. All rights reserved.

Defining disability § Disability: Interaction between the person and the environment Conceptualizing disability (WHO, 2000) § • Capacity, ability • Performance • Choice § Self-reported disability § Stigma, disclosure § Self-perception © 2014 University of New Hampshire. All rights reserved.

Identifying people with disabilities in population surveys © 2014 University of New Hampshire. All

Evolution of Census Questions 1970 Long Form 1980 Long Form 1990 Long Form Limit work ü ü ü Prevent work ü ü ü Self-care Ind. Living Hearing 2000 Long Form & ACS ü ü Vision 2008 ACS ü ü Ambulatory ü ü Cognitive ü ü Duration ü Public trans. © 2014 University of New Hampshire. All rights reserved. ü

6 -question sequence § Hearing difficulty deaf or having serious difficulty hearing (DEAR). § Vision difficulty blind or having serious difficulty seeing, even when wearing glasses (DEYE). § Cognitive difficulty Because of a physical, mental, or emotional problem, having difficulty remembering, concentrating, or making decisions (DREM). § Ambulatory difficulty Having serious difficulty walking or climbing stairs (DPHY). § Self-care difficulty Having difficulty bathing or dressing (DDRS). § Independent living difficulty Because of a physical, mental, or emotional problem, having difficulty doing errands alone such as visiting a doctor’s office or shopping (DOUT). © 2014 University of New Hampshire. All rights reserved.

6 -Questions & Other Surveys § BRFSS; CPS work limitation Q § Evidence that 6 QS understate disability prevalence • Use of SSDI/SSI in working-age population • Does not fully consider participation within a context 6© 2014 University of New Hampshire. All rights reserved.

Prevalence rate of non-institutionalized civilians, ages 25 -61 Based on 2010 CPS data Work limitation (B+C) (8. 3%) Six question sequence (A+B) (7. 9%) Six question sequence only (A) (3. 3%) Both six question sequence and workactivity limitation (B) (4. 6%) Work limitation only (C) (3. 7%) Six question sequence and/or work-activity limitation (A+B+C) (11. 6%) Burkhauser, Fisher, Houtenville, Tennant (2012) © 2014 University of New Hampshire. All rights reserved.

Conceptual issues in measuring disability § In-depth interviews of persons with disabilities • 6 Qs are not comprehensive • Functional limitation not always associated with impairment Independent living difficulty Because of a physical, mental, or emotional problem, having difficulty doing errands alone such as visiting a doctor’s office or shopping (DOUT). (Do you/Does anyone in this household) have a health problem or disability which prevents (you/them) from working or which limits the kind or amount of work (you/they) can do? © 2014 University of New Hampshire. All rights reserved.

Testing Alternate Questions © 2014 University of New Hampshire. All rights reserved.

2015 Kessler Foundation National Employment & Disability Survey § Kessler Foundation, UNH Institute on Disability, UNH Survey Center § Purpose: Document ways in which people with disabilities are “striving to work” § Long term goal: Reduce disparities in employment between people with & without disabilities § Dual-frame RDD sample of 3, 000 adults 18 -64 with disabilities © 2014 University of New Hampshire. All rights reserved. 10

Disability Screen § Developed a disability screen to identify people eligible for survey § Needed to be fast and comprehensive § Used ACS questions and then asked additional “prompting” questions based on “no” responses. § These “prompting” questions allow us to investigate who is saying “no” to the ACS questions! © 2014 University of New Hampshire. All rights reserved. 11

Disability Screen: Vision & Hearing Yes Hearing difficulty: Deaf or having serious difficulty hearing Vision difficulty: Blind or having serious difficulty seeing, even when wearing glasses © 2014 University of New Hampshire. All rights reserved. No Yes No

Disability Screen: Physical disability Do you or any of the adults in your household have a serious difficulty walking or climbing stairs? No Do you or any of the adults in your household have any difficulty walking a quarter of a mile - about 3 city blocks? Do you or any of the adults in your household have any difficulty doing physical activities such as lifting, carrying, bending or manipulating small objects? © 2014 University of New Hampshire. All rights reserved.

Disability Screen: Cognitive difficulty Because of a physical, mental, or emotional problem, do you or any of the adults in your household have any have difficulty remembering, concentrating, or making decisions (DREM). Do you think you or any of the adults in your household have a condition that makes it difficult to learn? Such conditions include attention problems (ADD), hyperactivity (ADHD), dyslexia and others No No Do you or any of the adults in your household have any emotional, psychological or mental health conditions? These may include anxiety, depression, bipolar disorder, substance abuse, anorexia, as well as other conditions No © 2014 University of New Hampshire. All rights reserved. Do you or any of the adults in your household have a developmental disability or disorder? This may include Down syndrome, autism, or Asperger syndrome, as well as other conditions”

Multi-method comparison § Testing using an RDD telephone survey (n=3013); 6 Qs & 10 Qs § Replication through web survey using an optin panel (n=3022); 6 Qs & 10 Qs § Replication through a convenience, selfselected panel (n=630); 6 Qs & 10 Qs © 2014 University of New Hampshire. All rights reserved.

Comparison of RDD 10 Qs with ACS prevalence estimates Hearing Vision Ambulatory Cognitive Kessler Survey (10 Qs RDD) 30. 6 30. 4 56. 6 45. 1 ACS Estimate (6 Qs) 57. 1 54. . 1 31. 0 27. 1 © 2014 University of New Hampshire. All rights reserved.

Disability %: 6 vs 10 Questions 70 ACS 6 Qs Web 10 Qs Web ACS 6 Qs RDD 10 Qs RDD 60 50 40 30 20 10 0 Vision Hearing © 2014 University of New Hampshire. All rights reserved. Mobility Upper Body Fn Cognitive

Findings: Mobility Prompts Mobility RDD © 2014 University of New Hampshire. All rights reserved.

Findings: Cognitive Prompts Cognitive RDD 32. 1 12. 8 18. 8 ACS Question Learning

Findings: Other Disability (RDD) • Do you have any other type of disability? • Yes: n = 1, 010 (33. 59%); n = 547 (54%) specified • 36. 6% - Chronic illness (e. g. , arthritis, heart disease, diabetes, fibromyalgia) • 29. 1% - Repeated an existing category • 9. 3% - Back problems, injury, pain • 15% - Other (e. g. , PTSD, brain injury, sleep disorder, seizures) • 10% - Unspecified (e. g. , medical, disabled vet) © 2014 University of New Hampshire. All rights reserved. 20

Near-Term Next Steps • Iterative testing to identify the most efficient set f question; minimal prompts • Test questions separating mental health, learning, and intellectual disabilities. • Test questions to identify chronic conditions that influence fatigue, stamina, and pain. © 2014 University of New Hampshire. All rights reserved. 21

Longer-Term Next Steps • How to collect information on date of onset • How to collect information on severity • Reliability and validity testing © 2014 University of New Hampshire. All rights reserved. 22

Questions/Comments? Contact Information Vidya Sundar, Ph. D, OTR/L Assistant Professor Occupational Therapy Department University of New Hampshire 4 Library Way Durham, NH 03824 -3520 Phone: (603) 862 -0284 vidya. sundar@unh. edu © 2014 University of New Hampshire. All rights reserved. 23