CDC disability report fails to include hearing loss
Sometime in 2013, you might have gotten a phone call in which you were asked to answer some health related questions. It was a comprehensive health survey called the BRFSS and, if you agreed to take the survey, you answered questions about everything from your seat belt use to your daily consumption of fruits and vegetables to your average amount of sleep per night. One question you were not asked, however, was whether you have hearing loss.
Let’s back up a bit. Since 2003, the Centers for Disease and Controls (CDC) has used the BRFSS to gather information about the health of people in the U.S. Up until now, the only data about disabilities came from questions related to activity limitation and special equipment use. In an effort to garner more comprehensive data, beginning in 2013 the BRFSS added five topics to its state based survey: Vision, cognition, mobility, self-care and independent living.
In a shocking omission, hearing loss was left out of the survey. That’s right: Given the opportunity to gather data on the third biggest public health concern for Americans after heart disease and diabetes, the CDC chose not to include hearing loss.
The reaction from the Hearing Loss Association was swift and strong. “People with hearing loss have been denied communication access in hospitals and doctors’ offices, and by public programs such as Medicare which does not currently cover the cost of hearing aids,” said Anna Gilmore Hall, executive director of HLAA. “The release of the report comes on the heels of celebrations surrounding the 25th anniversary of the Americans with Disabilities Act, and we are stunned they failed to understand the impact of excluding hearing loss as a disability that needs to be addressed.”
The Americans with Disabilities Act recognizes hearing loss as a disability. The Department of Health and Human Services recognizes hearing loss as a disability. Even the CDC includes research on adults with hearing loss on its website, as well as bringing significant attention to information about children with hearing loss. So why the oversight? The HLAA, for one, demanded an explanation.
When asked why hearing loss was left off of the survey, despite the fact that the CDC itself devotes a large portion of its website to hearing loss, the CDC blamed the mode of data collection. The survey was done exclusively by telephone (both landline and cell phone) and they were concerned that the survey mode would result in inaccurate information if hearing loss was included. The CDC also had this to say: "We would have loved to include data on people with hearing loss. The report is based on the BRFSS, which is a telephone survey that doesn't reach people with hearing loss.” However what this statement fails to take into account is that many of those with hearing loss have hearing aids along with compatible systems such as caption telephones or amplified telephones that allow them to hear and understand conversation just as well as those without hearing loss. Another possibility is that an alternative method of reaching survey participants that would take hearing loss into account could have been considered.
The impact of the omission is extensive. Hearing loss as a disability is already “invisible," that is to say not readily apparent just by looking at a person. In addition, hearing loss and its surrounding issues have historically been woefully ignored and underfunded. Having the data on hearing loss would help public health programs not only address the needs of those with hearing loss, but would also allow them to address and reduce the health issues that often accompany it. Discovering the demographics most associated with hearing loss be useful and valuable information when it comes to program planning and interventions, and the data would give the CDC a baseline for future health surveys, as well as garner support in the form of funding and allocation of assets.
In the meantime, the HLAA wrote a letter to Maria Town, assistant director of the White House Office of Public Engagement, to express outrage and request a meeting with the director of the CDC, and the U.S. Secretary of Health and Human Services to correct the oversight. The letter read, in part:
“In CDC’s own words, ‘Understanding the prevalence of disability is important for public health programs to be able to address the needs of persons with disabilities.’ Excluding people with hearing loss is not giving serious concern to hearing loss as a disability that impacts on a person’s quality of life, ability to work, and to fully participate in society.”
In the meantime, the CDC has responded to questions about the omission by saying that they are “exploring with states and territories the feasibility of including a question about hearing acuity on future BRFSS questionnaires."