1. Improve Disability Measures in National Surveys
A fundamental step towards improving existing disability data is to improve the disability measures included in national surveys. The inadequacy or absence of disability measures is widely viewed as a major shortcoming of available data, and steps to address this limitation have already begun. A June 2011 announcement out of HHS stated that, in accordance with the Affordable Care Act, a standard measure of disability must be included in all federally funded surveys. This standard measure is the six-question series used to identify disability in the ACS.
As the six-question series will become the standard measure of disability in many surveys, steps should be taken to understand who is identified and who is overlooked by these measures. Efforts to compare the six-question series to self-reported measures of disability have already been conducted and comparisons to administrative data are currently underway. Opportunities to better understand the new standard set of disability measures also exist in the 2011 NHIS and re-designed SIPP, both of which include measures of health and disability in addition to the six-question series. Analyses of these data sources with the purpose of improving the six-question series should be conducted. Subsequent to creating a profile of people for whom the six-question series misclassifies, additional questions could be developed to supplement the standard questions.
2. Facilitate Use of Administrative Data
Continuing to support and promote linkages between survey and administrative is an important means of improving disability data. Through the efforts of NCHS, survey-linked administrative data has become more available. As such efforts become more common, the means for conducting linkages might become more mechanized and expectations for conducting such linkages might become more commonplace. Some specific efforts could be undertaken in the short-term. One is to improve the match rates in existing linkages. Innovative new techniques for doing so are being developed and should be adopted when possible. Another is the creation of summary variables that would be useful to data users and that will help improve both data quality and ease of use. Finally, improved documentation and technical assistance are paramount to successful use of administrative data.
Another near-term focus would be to pursue opportunities to develop the capacity to use electronic health records for disability-related research purposes. To take advantage of this potential new resource, action needs to occur now while the standards for electronic health records are being developed. Of immediate importance is developing a measure or indicators that could be used to identify disability in health records. Once an identification strategy has been developed, lobbying for inclusion in health records can commence. Obtaining the support of an organization already involved in the development of electronic health records, such as the ONC, is another key next step.
3. Improve Samples in Existing Surveys
Making the most of existing survey data includes ensuring that people with disabilities are not omitted. The methods used to collect data can affect the sample of people who respond. A potential next step would be to encourage those responsible for existing national surveys, especially those that are currently relied upon to provide extensive information about people with disabilities, to reassess their data collection methods and determine if there are ways to increase the likelihood that all people with disabilities are able to participate. Existing surveys might consider using assistive technology or mixed methods (for example, telephone, paper, computer, and in-person interviews). Sampling frames should also be reassessed, with the possibility of including nonhousehold and group quarterspopulations, which often are excluded from sampling frames. This would serve to increase available data on a population with high disability prevalence and for whom little information is typically collected.