The Hearing Loss Association of America (HLAA) has issued an update on results achieved from its recent efforts to urge the CDC to stop excluding hearing loss from its information-gathering activities. The HLAA reports that in August 2015, when the Centers for Disease Control and Prevention (CDC) issued the results of a survey that asked questions for the first time about disabilities, the organization learned that questions about hearing loss had been completely excluded from the survey.
The HLAA reports that it sent letters to the CDC and to the White House, issued a press release, and an action alert asking consumers to express their views of CDC’s survey. Many hearing health advocates also sent emails with compelling stories, making it clear that hearing loss questions should have been included from the start.
As a result of these actions, the CDC contacted HLAA to provide an explanation. As previously reported in an August 19, 2015 article in The Hearing Review, the CDC has been working for years with states to collect healthcare data under the Behavioral Risk Factor Surveillance System (BRFSS) survey. In 2013, for the first time, the CDC included questions regarding disability in BRFSS. The CDC explained that they excluded people with hearing loss because the survey is done via telephone; CDC administrators were concerned that the population with hearing loss would be undercounted as a result of their collection method.
The HLAA reports that it finds fault with this explanation, as people with hearing loss have access to telephones: hearing-aid-compatible cell phones, phones with volume control, captioned phones, Video Relay Service, and even the old TTYs. In addition, HLAA argues, had the CDC been truly concerned that people with hearing loss do not own phones, they could have changed the data collection method.
According to the HLAA, a positive outcome has resulted from ongoing communications with the CDC. That is, the CDC asked HLAA to write a letter of support for inclusion of a question on hearing loss in upcoming surveys, which HLAA provided, and it has been announced that there will be a question seeking response from people with hearing loss in the 2016 survey. The HLAA feels that this is a start, but reports that the CDC’s question–“Are you deaf or do you have a significant hearing difficulty?”–does not go far enough. It would make more sense, says the HLAA, to include a question or questions that help determine whether the healthcare needs of residents who are deaf are different from those who have significant hearing difficulty.
The HLAA has asked that the one hearing-related question be reconsidered and revised. HLAA also has asked that the CDC’s marketing materials for this survey make it clear that until 2016, they have only a piece of the picture of health in the disability community. HLAA has asked to be part of a cross-disability advisory council to ensure that mistakes like this never happen again. The HLAA continues to work with the CDC on this issue, and invites suggestions that might contribute to reaching a resolution.
For additional details, see the Hearing Review article on the response it received from the CDC.
Source: HLAA; CDC