Census question change will change the disability community

The U.S. Census Bureau is a federal agency whose mandate goes beyond counting the number of Americans every 10 years in years ending with a zero. The bureau's American Community is an example.

Developed in 2005, the annual survey covers U.S. residents in all 3,141 counties in the 50 states, the District of Columbia and all 78 municipalities in Puerto Rico. It provides a demographic makeup of the U.S. by providing crucial information on various topics, including income, education, employment, health insurance coverage, and housing costs and conditions.

The data collected from the ACS is analyzed by government agencies to determine policy and funding on a national level and, on a local level, to evaluate where to put roads, schools and other essential services.

So, when the bureau considers changes to questions, it can't be for capricious reasons, nor can it be done arbitrarily. A proposed change to its queries on disability — ostensibly requested to align the United States with the World Health Organization's definitions — could have severe consequences for funding.

"Disability advocates say the change would artificially reduce their numbers by almost half," the Associated Press reported earlier this month. "At stake are not only whether people with disabilities get vital resources for housing, schools or program benefits but whether people with disabilities are counted accurately in the first place."

The 2023 survey featured 18 pages of data for the questionnaire, including queries requiring the respondents' "yes" or "no" answers about sight, hearing, and physical, mental or emotional conditions.

In research published in the October 2022 journal Health Affairs, University of Kansas researchers found that two critical federal surveys, including the ACS, missed "as many as 43% of individuals who should be counted, especially those with psychiatric disabilities and chronic health conditions."

There's often a stigma attached to being defined as disabled and, even today, a marginalization of a population whose daily challenges are overlooked by the greater community. It's why the AWS Foundation, for example, focuses on universal design, a concept addressing accessibility issues in buildings, products and environments.

The Census Bureau proposal would allow respondents to answer most of the questions with four choices: "no difficulty," "some difficulty," "a lot of difficulty" and "cannot do at all."

Gradients would give respondents room for self-definition. But that continuum could have adverse effects.

"During testing last year by the Census Bureau, the percentage of respondents who were defined as having a disability went from 13.9% using the current questions to 8.1% under the international standards," the AP said. "When the definition was expanded to include 'some difficulty,' it grew to 31.7%."

Thus, there is fear among advocates and rights groups nationally and locally.

"We understand that the National Advisory Committee to the Census Bureau has called on the agency to postpone these proposed changes and to reengage with the disability community on this vitally important issue," Donna Elbrecht, CEO of Easterseals Northern Indiana, told The Journal Gazette. "Easterseals supports that approach. Every person with disabilities must be counted by the Census Bureau. Undercounting means people with disabilities risk losing federal funding necessary for their health and well-being."

The fluctuation didn't surprise Patti Hays, executive director of the AWS Foundation. Nuance is something missing in the disability narrative. Letting people define themselves on a gradient is not inherently wrong — if we understand the survey's four choices provide snapshots of a moment.

"If I am a deaf student at Gallaudet University, my deafness is not a disability because everybody there knows American Sign Language," she told The Journal Gazette, referring to the D.C.-based institution chartered in 1864 to educate deaf and "hard of hearing" students.

However, that person's definition of the four choices could change away from Gallaudet.

"I know people who have learned to adjust (to their disability), but that doesn't necessarily mean they should be excluded from aid or help because that aid in the past has been beneficial," Hays said.

The ACS addresses the "what" but not the "why," which is essential for policymakers seeking equitable and just solutions. If aligning ourselves to an international definition would open us to unnecessarily harming millions of Americans, then our leaders need to consider other options or opt out.