US Health Survey Overhaul Sparks Disability Concerns

Federal officials are planning significant cuts to the National Health Interview Survey (NHIS), a nearly 70-year-old government health assessment, raising alarms among researchers and disability advocates who fear it will lead to an underestimation of the disabled population in the United States.

The proposed changes aim to reduce the number of questions on the survey, which has faced declining response rates. While officials state the reductions will not be as severe as initially feared, some estimate that as many as a quarter of wheelchair users and over a third of individuals who are blind or deaf could be miscategorized as not disabled under the new format. This could hinder the government's ability to recognize and address the health needs of many Americans with disabilities.

The survey, a $40 million annual project conducted by the U.S. Census Bureau on behalf of the Centers for Disease Control and Prevention (CDC), gathers data from approximately 30,000 households each year. Its findings have been instrumental in shaping public understanding of various health issues, including the prevalence of chronic fatigue syndrome, X-ray usage, childhood seizures, and health insurance coverage, as well as tracking progress on issues like obesity and smoking.

Questions slated for removal include those pertaining to memory, fatigue, arthritis, mobility challenges, and the use of assistive devices such as hearing aids, canes, wheelchairs, and scooters. Scott Landes, a sociology professor at Syracuse University specializing in disability research, expressed concern that these changes mean "We just won't know any of that anymore."

Currently, the adult portion of the NHIS includes 490 health questions. Officials anticipate the 2028 version will contain between 200 and 225 questions. The redesign is intended to shorten the survey completion time from over an hour to approximately 30 minutes, an effort to combat low participation rates attributed to busy schedules, privacy concerns, and distrust in government data handling.

The NHIS, first conducted in 1957, has historically been updated every 15 to 20 years. The current redesign is driven by budgetary constraints and difficulties in staffing in-person interviews, exacerbated by a federal hiring freeze. Changes in data collection platforms by the Census Bureau for the upcoming 2030 census also influenced the survey's reconfiguration.

To adapt to modern data collection challenges, including restricted access to gated communities and increased use of security cameras, the survey methodology is shifting. The initial phase will involve invitations to complete the survey online or via paper questionnaires, with Census Bureau staff conducting a smaller, second round of in-person follow-ups.

A notice detailing the survey redesign was published in the Federal Register in August, initiating a public comment period that will conclude on October 20.