Writing this week in STAT, researchers from the Johns Hopkins Disability Health Research Center, Syracuse University, and the Institute for Health and Disability Policy Studies at the University of Kansas argue that the questions used by the US Census Bureau and other federal agencies are “missing millions” and severely undercounting both the number of people with disabilities and the types of disability experienced.

Currently, two question sets are frequently used to assess disability in federal surveys–including Census Bureau surveys and in surveys used by the Centers for Disease Control and Prevention to monitor health and healthcare in the population. These question sets focus on asking respondents about their limitations on specific tasks and activities. For example, they ask if someone has difficulty seeing, even while wearing glasses.

The researchers argue that the question sets define disability only in terms of functional limitations, causing the questions to miss large groups of disabled people, including “between 23% and 59% of people with mental health or psychiatric disabilities, between 13% and 33% of people with intellectual and developmental disabilities, and between 32% and 53% of people with chronic health conditions, such as long Covid.” They highlight the impact that these data limitations have had on their research – without accurate prevalence estimates, it is “challenging to understand and address the barriers this population faces across all sectors of life, including education, employment, health and healthcare, housing, transportation and food access. Without improved measures of disability and the collection of this data as a core demographic, we can’t answer simple questions: How many teachers have disabilities? What percentage of public transit riders are disabled? What is the fall rate of patients with disabilities in nursing homes or hospitals?”

To capture a more accurate picture of disability in the United States, the researchers urge the government to undertake three tasks. First, they argue that the federal government should invest in a question set that more accurately captures the full range of disability. “While measures of functioning are important to understand the limitations certain disabled people experience and could identify disabled people who may benefit from specific programs or benefits. . . [u]sing this data to determine national estimates of disability is akin to using data on languages used in the home to determine [race and ethnicity].”

Second, they argue that disability ought to be captured whenever other demographic information, like age, gender, race, and ethnicity, is collected. They say this is essential to understanding the US population and improving the equity and administration of a wide range of government programs.

Third, they argue for a clarified definition of disability. They recognize that, at present, “[t]he term “disability” is used to describe different things to different people in different settings, making the development of a standard measure challenging. Being disabled is an integral part of some people’s identity; for others, a medical diagnosis, a natural part of aging, or even a fate they think is worse than death.” Ignoring the diversity of these experiences, however, by “simply measuring functional limitations,” is “not reason to accept the continuation of” incomplete disability question sets. Instead, they argue that it is precisely why investment is needed to understand these differences and create, in collaboration with disabled people, inclusive disability survey questions.

Read the full article here.