Federal surveys fail to count 20 to 43% of individuals who are disabled

January 30, 2023

AUCD's network of Intellectual and Developmental Disability Research Centers (IDDRCs) consists of 16 Centers. Fifteen Centers currently receive funding from the Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD). IDDRCs contribute to the development and implementation of evidence-based practices by evaluating the effectiveness of biological, biochemical, and behavioral interventions; developing assistive technologies; and advancing prenatal diagnosis and newborn screening.

LAWRENCE, KS—People with disabilities represent the nation’s single largest and fastest growing minority group, according to the Centers for Disease Control and Prevention, with more than 1 out of 4 adults qualifying as disabled.

However, up to nearly half of this population may be uncounted in federal estimates, research from the University of Kansas has shown, potentially resulting in decreased access to public funding and support for these populations.

Researchers at the KU Life Span Institute, an affiliate of the IDDRC network, found that the two most common sets of questions used in federal surveys produced significant gaps when compared with results of a sample of people who self-report disabilities. The American Community Survey (ACS-6), a U.S. Census Bureau survey that explores community social and economic needs, failed to identify 20%. The Washington Group Short Set (WG-SS), developed by the World Health Organization to be used in surveys and censuses worldwide, failed to identify 43%. 

“What we know about disability in America largely comes from these questions,” said Jean Hall, director of KU’s Institute for Health & Disability Policy Studies at the Life Span Institute. 

Under the Affordable Care Act, the federal government is required to identify people with disabilities in public health surveys. Prior to the study, while researchers suspected some people with disabilities and chronic conditions were overlooked by the ACS-6 and WG-SS, the extent was unknown. 

The research found gaps were particularly pronounced in respondents with psychiatric disabilities or chronic health conditions.  

In addition, the COVID-19 pandemic resulted in a sharp increase in the number of people with mental health conditions, as well as complications from long COVID-19, which can both exacerbate existing disabilities or present new ones. The study found that the two standard measures miss people with these conditions in the greatest numbers, further leading to undercounting. 

The measures produce both full and partial false negatives. Some individuals may be partially counted as having a disability — but not one that reflects their self-reported condition. Others are missed completely by the measures, noted as a full false negative.

“We argue that sometimes you’re identifying people as disabled but not categorizing them correctly with the type of disabilities they report, and because of that, probably not getting people the supports and services they need,” Hall said. 

Researchers suggest adding a complement of questions to help identify people with disabilities that are being overlooked.  

The study, “Comparing Measures Of Functional Difficulty With Self-Identified Disability: Implications For Health Policy,” was authored by KU researchers Hall, Noelle Kurth and Kelsey Goddard, and by Catherine Ipsen and Andrew Myers of the University of Montana.

This article originally appeared on KU Life Span Institute's site.