The document discusses the challenges of defining and measuring disability in the United States, emphasizing that disability is a complex state rather than a fixed diagnosis. It highlights issues in national household surveys, including the validity of data, survey design, and the importance of context in interpreting self-reported limitations. The document also calls for a reevaluation of disability models to better capture the nuanced experiences of individuals with disabilities.

1. Disability Surveillance using National
Household Surveys in the United
States: Where have we been and
where are we going?
Eric A. Lauer, MPH, PhD Candidate
Institute On Disability
New Hampshire, USA

2. Introduction
• Focus
– The difficulties of defining disability. The concept
that disability is a state of being rather than a
diagnosis.
– There are unintended consequences of
measurement. We lose people in the national
surveillance model in the United States.

3. Overview
• Challenges for evaluating data
• Health & Disability Models
• National Survey Methodology
• Survey Administration
• Introduction of the Six Question Sequence
• Self-Reported Limitations
• Disability Surveillance in the United States

4. Challenges
• What is the relationship between health and
disability?
– Distinct yet overlapping constructs
– Function & Functional Limitations

5. Health & Disability Model
Molla, M.T., J. H. Madans, D. K. Wagener, and E. M. Crimmins. "Summary Measures of
Population Health: Report of Findings on Methodologic and Data Issues.". Healthy People
2010 (2003).

6. International Classification of
Functioning: Domains

7. ICF Applied

8. Challenges, cont.
• How do you evaluate the data collected?
– Consider the historical context
– Consider the implications of survey design,
sampling design and underlying constructs
– Estimating validity, reliability and error
– Strengths, weaknesses and limitations of data

9. Survey Method Overview

10. Challenges, continued
• Most importantly, how do we move
forward???
– Example, Cognitive Limitation & MEPS
– Acknowledged model gaps
– Discuss limitations in an open and transparent
manner

11. Model Gaps
There are several concepts that are missed by models of disability:
• Individuals can be perceived as having a disability, or consider themselves to have
a disability, but not have this evaluation based on any measurable phenomenon
• Disability can only be measured in the context of another domain or area. Some
models do not take this into account and there is a loss of explanatory power.
• The construct of disability is not stable, 5000 people in 5000 different life
circumstances will have difference rates of disability.
• That disability itself, as a distinct phenomenon, independent of any other factor
(age or health), changes over time. It may not be constant. Duration of disability
should be measured.
– There is acute and chronic disability, intermittent, and relatively stable/unstable
• Systems that address/explain disability are often not practical enough and do not
directly inform areas that could be targeted for the alleviation or prevention of
disability (Ex. poorly defining the concept of the environment)

12. Areas of Discussion
1.
2. 3.
4.

13. Constructs

14. Constructs, continued.
Construct
Error
Item
Malhotra & Grover, 1998

15. Survey Administration

16. Survey Administration, continued
• Sampling Design
• Primary Sampling Units
• Over- and Under- Sampling
• High- and Low- Response Regions
• Phone, Paper and In-Person Interviewing
• Subpopulations missed
• Non-response

17. Self-Report

18. Self-Report
• What does an individual consider a limitation?
• What does an individual consider (un)healthy?
• How does an individual interpret the actual
question?
• Systematic issues of interpretation, known
and unknown
• Proxy Response

19. Six Questions
• Is this person deaf or do they have serious difficulty
hearing?
• Is this person blind or do they have serious difficulty
seeing even when wearing glasses?
• Because of a physical, mental or emotional problem,
do you have serious difficulty concentrating,
remembering or making decisions?
• Do you have difficulty walking of climbing stairs?
• Do you have difficulty dressing or bathing?
• Do you have difficulty doing errands alone such as
shopping or visiting a doctor’s office?

20. Six Questions, continued
Quest Age Y/Y Y/N or N/Y
Hearing 5+ 3.0% 3.0%
Vision 5+ 1.2% 2.9%
Mobility 5+ 5.4% 4.7%
Cognitive 5+ 3.4% 3.9%
Self-Care 5+ 1.4% 1.8%
Independent 15+ 3.5% 3.5%
Any 5+ 10.5% 8.3%

21. Interpretation

22. Estimation & Interpretation
• Appropriate Hypotheses
• Appropriate statistics
– Rates versus ratios, multiplicative effects
• Confidence Intervals & Standard Errors
– Iterative repeated, samples, formulas
• Bias
– Underlying bias versus biased analysis
• Limitations & Generalizability
– State versus national data
• Weighting
• Imputation

23. What is the
overall state of
disability research?
Malhotra & Grover, 1998. An
assessment of survey research in
POM: from constructs to
Theory. Journal of Operations
Management 16, 407-425.

24. Where do we go from here?
Pick up from here…
Malhotra & Grover, 1998

25. ICF-AHRQ Recommended Health
Outcomes
Butler M, Kane RL, Larson S, Jeffery MM, Grove M. Quality Improvement Measurement of Outcomes for People With Disabilities. Closing
the Quality Gap: Revisiting the State of the Science. Evidence Report/Technology Assessment No. 208. (Prepared by the
Minnesota Evidence-based Practice Center under Contract No. 290-2007-10064-I.) AHRQ Publication No. 12(13)-E013-EF. Rockville, MD:
Agency for Healthcare Research and Quality; October 2012. www.effectivehealthcare.gov/reports/final.cfm.

26. What is it we are trying to measure?
What matters most?
• Should be based on the outcomes of goals of the
research
• Establish a relationship between the level of
focus and outcomes of interest
• Distinguish between the following factors:
– Interventions directed at a disability from specific
interventions directed at a given medical problem for
a person with a disability
– Comprehensive programs designed to integrate
medical and social services for people with
disabilities.

27. What is it we are trying to measure?
What matters most?
Butler M, Kane RL, Larson S, Jeffery MM, Grove M. Quality Improvement Measurement of Outcomes for People With Disabilities. Closing
the Quality Gap: Revisiting the State of the Science. Evidence Report/Technology Assessment No. 208. (Prepared by the
Minnesota Evidence-based Practice Center under Contract No. 290-2007-10064-I.) AHRQ Publication No. 12(13)-E013-EF. Rockville, MD:
Agency for Healthcare Research and Quality; October 2012. www.effectivehealthcare.gov/reports/final.cfm.

28. Thank you!
• Contact Information
Eric A. Lauer
Email: eric.lauer@unh.edu
Phone: 603-862-4320