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, we were stunned to find that people with hearing loss were entirely left out.
HLAA sent letters to the CDC and to the White House, issued a media release, and an action alert asking consumers to express their thinking of CDC’s survey. Many of you sent emails with compelling stories, making it clear we should have been counted from the start.
As a result, CDC contacted HLAA. We learned that CDC has been working for years with states to collect health care data under the Behavioral Risk Factor Surveillance System (BRFSS) survey. In 2013, for the first time, CDC included questions regarding disability in BRFSS. They tell us that they excluded people with hearing loss because the survey is done via telephone; they were concerned that the population with hearing loss would be undercounted as a result of their collection method.
We find this unacceptable. Clearly, 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, had they been truly concerned that people with hearing loss do not own phones, they could have changed the data collection method. Instead of underrepresenting us, they chose not to count us at all, rendering us invisible once again.
In our talks with CDC, we were asked to write a letter of support for inclusion of a question on hearing loss in upcoming surveys, which we provided. We have since learned that there will be a question seeking to find people with hearing loss in the 2016 survey. It is a start.
However, the question that was approved by the CDC, “Are you deaf or do you have a significant hearing difficulty?” does not go nearly far enough. If you are a public health official trying to tease out information about the health of your community, one would think it would make sense to make the most of the opportunity. It just makes sense to learn whether health care needs of residents who are deaf are different than those who have significant hearing difficulty. We have asked that this question be reconsidered and revised.
HLAA also asked that the CDC’s marketing materials for this survey makes it clear that until 2016, they have only a piece of the picture of health in the disability community. HLAA also asked to be part of a cross-disability advisory council to ensure that mistakes like this never happen again. It has been said before, and truly is applicable in this case, “nothing about us without us.” This would never have happened had we been there when decisions were being made.
We are continuing to work with the CDC. They have been open to our suggestions and we feel while not all issues have been resolved, we are making a good start. We have you to thank for that. Your voices were heard.