Do We Have Enough Data on People with Disabilities?

Logo for the Centers for Disease Control and PreventionYesterday, on Martin Luther King, Jr. Day, the United States celebrated the pioneering achievements of a great 20th-century civil rights leader.  Although Martin Luther King, Jr.’s agenda, when he was alive, was equality, justice and freedom for all African-Americans, the U.S. civil rights laws he helped enact in the 1960s had reverberations far beyond the community he fought for.  For people with disabilities, the results of King’s civil rights efforts helped give voice to a broad-based disability movement that started in the 1980’s by campaigning against lack of adequate services for people with disabilities, culminating with the passage of the Americans with Disabilities Act of 1990.  Thanks to the efforts of disability leaders across the United States and around the world, people with disabilities enjoy a quality of life that surpasses that of their peers of earlier times.

Yet, there is still much to be done.  Last week, according to Disability Scoop, the Centers for Disease Control and Prevention (CDC) reported that it “[wasn’t] able to obtain a complete picture of the health experiences of people with disabilities as compared to others simply because too little information exists.” In its report, titled “CDC Health Disparities and Inequalities Report — United States, 2011,” the CDC looked at income, race and gender and how they help predict whether a person is likely to be healthy or not healthy.  Yet, compared to these factors, for which enough data was available for every one of the 22 topics it explored, the CDC could draw on data for people with disabilities for just eight of these topics.

In other words, we as a country do not know enough about what Americans with disabilities experience with respect to their health.  I am not an expert on health insurance, but it would not be surprising if medical insurers have a less complete picture of the health situations of people with disabilities compared to those by race or income, leading them to deny coverage for some people with disabilities where they most need it, or to set premiums that are out of alignment with what the data should show.  For example, cochlear implants are mostly covered, but (cheaper) hearing aids are not covered for the most part.  How much of that decision not to cover hearing aids is based on incomplete data?  Hard to say, but it sounds plausible if there is unreliable data to guide actuarial decisions.

Health care is a very sensitive political issue for this generation, and as an impartial writer, I do not choose to tread in the political debates on this issue.  Yet, on the topic of coverage for people with disabilities — many of whom are increasingly baby boomers who are approaching retirement age — it is essential that there be complete and accurate data on their health experiences, so that insurers, legislators and citizens are better-informed on what actions to take with regard to insurance for them.

That there is little data on the health experiences of people with disabilities, compared to other groups, is unfortunate.  While more people with disabilities are living healthier lives thanks to better assistive devices and better services, there is still much to do to ensure they are treated on the same level as those without disabilities on every aspect of their lives — including health insurance.  Greater efforts to procure more complete data on people with disabilities would be a good start.

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