In this brief, we examine the limitations of current approaches to measuring disability status in federal surveys and the implications of these measurement challenges for assessing disparities in health and well-being. Consistent with prior research, we find that standard questions do not identify a meaningful share of adults with disabilities. We then show how undercounting the disabled population presents an incomplete picture of economic and health inequities.
WHY THIS MATTERS
National household surveys collect vital demographic and health data on the US population, including people with disabilities. These data inform policy and planning, guide programmatic funding allocation, highlight service needs, and support efforts to enforce antidiscrimination laws. Recent proposals to adopt a more restrictive definition of disability in major federal surveys could exacerbate measurement problems and have significant consequences for research and policy.
WHAT WE DID
Our analysis used data from a nationally representative sample of adults ages 18 to 64 who participated in the Urban Institute’s December 2023 Well-Being and Basic Needs Survey. Participants were asked the standard six questions used in the American Community Survey (ACS-6)—which ask about difficulties with hearing, vision, cognition, mobility, self-care, and independent living—and an additional question on communication difficulties (we refer to these questions as the ACS-6+). They were also asked whether they have any long-term physical, mental, or emotional health conditions that limit their activities (referred to as “any activity limitation”).
We examined how these measures intersect with other potential indicators of disability. We then assessed disparities in self-reported health status, material hardship, and experiences of unfair treatment in health care settings by comparing adults reporting a disability based on the ACS-6+, adults with other activity limitations only, and adults who did not report a disability or limitation.
WHAT WE FOUND
- Standard disability status measures do not identify a significant share of adults who are likely to have disabilities.
- In December 2023, 21 percent of adults ages 18 to 64 reported a disability based on the ACS-6+. An additional 7 percent did not report one of these disabilities but reported other health-related activity limitations.
- Only seven in 10 adults enrolled in Medicare (and who likely qualified for Medicare based on receipt of Social Security Disability Insurance) reported a disability based on the ACS-6+. Together, the ACS-6+ and activity limitation measures identified about eight in 10 Medicare enrollees.
- Among adults who were neither working nor looking for work because of a health problem or disability, 80 percent reported a disability based on the ACS-6+, and another 9 percent reported an activity limitation not captured by those questions.
- Only six in 10 adults experiencing serious psychological distress reported a disability based on the ACS-6+, and seven in 10 adults reported a disability based on either the ACS-6+ or having any activity limitation.
- Reliance on standard disability measures alone presents an incomplete picture of economic and health disparities.
- Adults reporting a disability based on the ACS-6+ and those only reporting other activity limitations both experienced fair or poor health at high levels (42 percent versus 29 percent), compared with only 9 percent of adults without any disability or limitation who experienced fair or poor health.
- Adults who reported disabilities based on the ACS-6+ or other activity limitations only also faced high levels of material hardship in the past 12 months, including household food insecurity (51 percent versus 38 percent), unmet needs for health care because of costs (32 percent versus 29 percent), and problems paying family medical bills (33 percent versus 25 percent). Rates of hardship for these groups far exceeded the rates reported by adults without any disabilities or limitations.
- About 14 percent of adults with disabilities based on the ACS-6+ reported experiencing unfair treatment in a health care setting in the past 12 months because of a health condition or disability, as did 7 percent adults with other activity limitations, compared with just 1 percent of adults without disabilities.
WHAT IT MEANS
Adults with activity limitations not captured by the ACS-6+ reported relatively high rates of fair or poor health, material hardship, and unfair treatment in health care settings, suggesting that grouping them with nondisabled adults underrepresents their experiences and hinders accurate measurement of disparities in health and well-being.
Proposals to adopt a more restrictive definition of disability status in the American Community Survey would exacerbate these measurement challenges by excluding an even broader segment of the disabled population that experiences worse average health and economic outcomes than people without disabilities. This change would result in an overestimation of adverse outcomes in both disabled and nondisabled groups. Our findings suggest further research and collaboration are needed to develop more comprehensive and inclusive measures of disability status.