Assessing the Need for a National Disability Survey: Final Report. III. Addressing Disability Data Limitations with Incremental Changes to Existing Efforts

The TAG members and federal and state staff who provided input for this study indicated a number of ways that existing disability data collection efforts could be strengthened to address data gaps and limitations. In this chapter, we describe a variety of strategies that could be used to address survey data limitations. As noted previously, in developing the list of options we did not constrain them based on potential costs, feasibility, or practicality. Our goal was to document a variety of ways that disability data limitations could be addressed without making judgments about which would be most feasible or desirable. The discussion in this chapter focuses on approaches that build on existing data collection efforts, and thus, might be considered incremental in nature. In Chapter IV, we discuss another possible strategy--fielding a new national disability survey.

• A. Increase Awareness of Existing Data

  • The perception of several TAG members was that a lot of good disability-related data exists, but that knowledge and use of some data sources are limited. The 40 national surveys reviewed for this project offer a variety of disability-related data. These surveys collect information about people with disabilities that covers a wide array of topic areas with varying degrees of detail. The list of surveys reviewed is not exhaustive and it is likely that most program administrators, policy makers, and researchers are unfamiliar with the content of all national surveys that contain information about people with disabilities. It is possible that some of the perceived limitations in existing disability data and unanswered questions might simply be due to a lack of awareness that certain survey data exist, or that certain administrative data can be accessed by external agencies. Some of the data limitations and unanswered questions indicated by state and federal agency staff might be addressed if information about the content of relevant surveys was known or if the resources to analyses these data in the ways needed to answer disability-related policy issues were available.

    Several Census Bureau efforts were noted as being underutilized, such as small area estimates, which can calculate prevalence rates at the school district level, and research data centers, where researchers can go to gain access to results run on restricted data. The Census is also developing synthetic data files, which use variable imputations to mask the identity of survey respondents while making previously sensitive data available to the public.

    One TAG member also mentioned an opportunity to coordinate state data collection efforts to produce a large, national database. Dissemination of these efforts to the research community might help many researchers answer questions currently perceived to be unanswerable with existing data.

    Improving available information about existing data and making it easier for federal and state agency staff to access it is one potential way disability data limitations might be addressed. Reports such as those produced for this project, which summarize a great deal of information in a format that is easily accessible, are one way this can occur. The Rehabilitation Research and Training Center on Disability Statistics and Demography, funded by the National Institute on Disability and Rehabilitation Research in the U.S. Department of Education, represents another effort to produce a variety of easily accessible information about and statistics from existing national data on people with disabilities. Periodic cross-agency panels or work groups that exchange information about the nature and limitations of disability data are other means that have been used. Examples of these include the ICDR, including its Interagency Subcommittee on Disability Statistics, and the Federal Interagency Forum on Aging Work Group on Data Needs. TAG members suggested organizing a disability statistics group, similar to the ICDR, which would hold monthly phone calls and periodic meetings to share information.

• B. Improve Disability Measures in National Surveys

  • As outlined in Chapter II, national surveys include a variety of disability measures. Researchers have produced several theoretical frameworks to model disability, but translating these models into survey questions can be challenging. Although disability is a difficult concept to define and measure, efforts to develop a succinct but comprehensive set of questions to identify people with disabilities have great potential value. Such efforts led to a six-question series developed by an interagency work group, which is becoming the new standard for identifying disability in national surveys (Adler et al. 1999). These questions are now included in the CPS, ACS, AHS, and NHIS. In June 2011, HHS announced that, in response to new requirements in the Affordable Care Act, they have developed draft standards for the collection of survey data that, among other things, will require all federal surveys to include the six-question series on disability. The six-question series solicits information about hearing, vision, cognitive, ambulatory, self-care, and independent living disabilities.

    Despite the considerable efforts to develop these questions, they appear to not capture a significant number of people that are identified by program administrators as having disabilities, and might miss others as well. In a recent paper, Burkhauser et al. (2010) find that in the noninstitutionalized population ages 25-61, the six-question sequence identifies only 65 percent of those who identify themselves as SSDI or SSI beneficiaries. They argue for the addition of a work-limitation question, similar to that used historically in the CPS, which by itself identifies approximately 84 percent of those reporting SSDI or SSI receipt in the 2009 CPS as having disabilities. Combining the six questions with the work-limitation question increases the percentage of beneficiaries identified as having disabilities to 92 percent.

    It is important to note that this research uses self-reports of SSDI or SSI receipt, which might themselves be inaccurate. Follow-up research by Burkhauser and his co-authors will use CPS data matched to SSA data to validate self-reports of SSDI or SSI receipt and assess the extent to which the six-question series captures this population. They will also compare the SSA primary impairments of those captured by the various disability questions to the impairments of those not captured. This analysis will be able to assess the validity of a concern expressed by FAEP members: that the six questions do not adequately identify people with significant behavioral, emotional, and intellectual disabilities.

    Though not without its limitations, the adoption of a common set of questions in surveys is nonetheless a positive contribution to the national disability data system. The addition of the six common questions across surveys was viewed by FAEP and TAG members as an important first step and suggests similar types of cross-survey questions could be developed in the future with effective collaboration efforts. While supportive of efforts to use a common set of disability questions in all federal surveys, TAG and FAEP members argued that complementary efforts were very important and needed to be pursued at the same time. These include:

    • Preserving the ability to produce trends by at least temporarily including old disability questions when new questions are added. For example, retaining the work-limitation question in the CPS would be beneficial for producing long-term trends.

    • Conducting research to better understand who is being captured by the six-question disability series, as well as who is not being captured. What types of impairments are and are not captured, and of what severity? What other characteristics distinguish those with disabilities who are captured from those who are not? Opportunities to study the six-question series will be available with data being collected for the 2010 and 2011 NHIS and the data planned for the re-designed SIPP. Since 2008 the NHIS has included the six-question series, along with numerous other measures of health and disability. Likewise, the re-designed SIPP will include the six-question series, a set of re-designed disability questions, and a module that will include questions contained in the former SIPP disability topical module that is being supported by SSA specifically to offer the opportunity to study the new SIPP disability questions and their implications.

    • Strategically adding disability questions to selected surveys, such as a work-limitation question or questions designed to identify specific conditions (for example, psychiatric or intellectual). The intent is to add detail that will be useful for the survey itself, but also provide information that illuminates the findings from other surveys that do not include the additional questions.

    The FAEP and TAG members recognized that it will never be possible to develop a small set of questions that will perfectly distinguish between the disability and nondisability populations, nor even to reach agreement on who should be included in disability and nondisability populations. Instead, they think that the expanded use and better understanding of a consistent measure of disability would help answer a number of questions raised by federal and state agencies, despite the inherent flaws in any such measure. Notably, one agency commented, “To date, lack of standardization of the disability definition has made comparison across surveys difficult; there are even differences in the estimates of the number of people with disabilities.” The failure of the current system to consistently estimate statistics as basic as prevalence by any disability definition is a major shortcoming of existing data. At the same time, it is critically important to have a sophisticated understanding of any measure’s limitations, and to address those limitations through improvements in the measure when it is feasible to do so.

• C. Facilitate Increased Use of Administrative Data

  • As discussed in Chapter II, administrative data sources are extensively used by federal and state agencies and, when linked with survey data, add a longitudinal perspective to cross-sectional data. Administrative data also provide more accurate and detailed information about program participation and service use than can be collected via survey. CMS and SSA administrative data linked with large national surveys are particularly likely to be useful for studying a wide range of disability program and policy issues, and important linkages already exist.

    There are many additional possibilities for enhancing the use of administrative data. We describe several appealing options below.

    1. Maintain and Strengthen Efforts to Link Survey and Administrative Data

    As shown in Table II.2, survey and administrative data linkages currently exist for many national surveys,and additional efforts in this area are an important way to address many of the disability data limitations discussed in Chapter II. Examples of administrative files that have been made more widely accessible include the NCHS survey-administrative data linkage efforts, and SSA administrative data linked with the SIPP, made accessible through the SIPP Synthetic Beta data product. An example of a new effort that might be supported would be to develop a match between the ACS data and SSA, Medicare, and Medicaid data. Our understanding is that Census and SSA have already taken steps to test matching procedures. The ACS offers the largest sample sizes of all of the ongoing national surveys, and linkages with administrative data from these major programs would support state and community-level estimates for participation, benefit, health, service, and other measures of interest to researchers and administrators.

    Improving the match rates in the survey-administrative data links conducted by NCHS would be another means of strengthening such efforts. O’Hara (2007) describes a method by which data can be linked to administrative records without the collection of SSNs from respondents. Currently, households selected for the CPS are sent letters informing them that their data may be combined with other data sources, unless they request otherwise. Following the interview, the Census Bureau works with SSA to use information collected on a sample member’s name, address, and date of birth to obtain a SSN. Using this method, O’Hara found that 89 percent of all adults had verified SSNs that could be used for matching in the 2006 CPS. For this method to be applicable to other surveys, it requires that a consent process be added to the interview, where respondents consent to providing access to information on their program participation and earnings.

    2. Maintain and Strengthen Efforts to Match Administrative Data Across Agencies

    Cross-program data linkages would be useful for developing a better understanding of how the target populations of programs overlap and the extent to which service needs are met or are duplicative. Many interagency data use agreements are already in place; developing more of these would expand access to administrative data. There are several examples of existing linkages that provide a template for developing further linkages across agencies. For example, within the next two years, SSA is planning to develop files of Medicare and Medicaid enrollment and claims records that can be linked to SSA’s disability data. SSA and RSA have already developed linkable RSA records.

    The current agreements we are aware of are all bilateral, though multilateral matches would be valuable in providing information on participation in more than two programs. We understand that SSA, CMS, and the U.S. Department of Education have developed a trilateral agreement but that it has not yet been executed. Its execution, along with SSA’s data linking activities, would make it possible for approved researchers in the three agencies and their approved contractors to link Medicare, Medicaid, SSDI, SSI, and RSA records. Qualified SSA employees would also be able to link the IRS earnings records.

    Another way to expand such efforts might be to develop a stand-alone data workroom, without personal identifiers, that contains linkable data from numerous program sources: SSA, CMS, earnings data, food stamps, HUD, Temporary Assistance for Needy Families, and perhaps others. This is essentially a component of the vision for the re-engineered SIPP, which has plans to incorporate greater use of administrative data in its design. Attaching selected data from these sources to the SIPP records would be valuable. Allowing restricted-access to a broader set of administrative data would also be useful for many other purposes, including production of basic statistics on the participation of individuals with disabilities in all government programs and longitudinal analysis of individuals as they pass through these programs.

    3. Make Greater Use of Unemployment Insurance (UI) Records

    Employment and earnings information collected by states for the UI program are reported quarterly and, as such, represent the most frequent and consistently collected administrative data source on employment and earnings. However, states vary in the extent to which they permit researchers or others to use state-level quarterly UI data, and while these data are currently made available to the Federal Government, they may only be used for very specific federal administrative functions. Developing linkages to federal administrative data or survey data and making the UI data accessible for more research purposes would address some of the disability data limitations surrounding the issue of employment.

    4. Develop the Capacity to Utilize Electronic Health Records to Address Disability Issues

    FAEP members noted that the emerging use of electronic health records might offer future opportunities to use these data on their own or to supplement other data for disability research and policy purposes. Participants acknowledged that use of electronic health records is not feasible at this point in time, but might be a potentially important source of data on disability in the future. It was also noted that, if we expect to be able to use these data for program and policy purposes, work needs to begin now, while the standards and content of electronic health records are still being developed.

    Of particular importance is the development of a standard set of items that measure disability and functioning, for use in the identification of people with disabilities in health records. Such measures would also be useful to track changes in disability and functioning over time and in response to particular medical treatments and procedures. Currently, information about disability and functional limitations is not routinely collected in medical records, but as is the case with national survey data, having a basic means to identify people with disabilities is a critical step to being able to use a data source to address disability-related research and policy issues.

    SSA is at the forefront of efforts to collect disability data from electronic records. They have established contracts with local health information networks under which they can request the electronic records of applicants for SSDI and SSI benefits, with the approval of the applicant. The availability of electronic records for an applicant reduces the time it takes SSA to collect medical records from months to minutes, and reduces the likelihood that SSA will need to order a consultative examination for the applicant because of missing information. Once SSA has the electronic record, SSA can more readily obtain information from the record than they can from a paper record, and can also store critical information from the record in an electronic record. Currently, only a small share of applicant records are collected electronically, but SSA is pushing to rapidly increase this share. SSA also has plans to develop a repository of electronic medical data on its applicants, to support program management and research.

    While there exists an opportunity to shape the future of electronic health records for purposes of disability research, an institution is needed to spearhead and coordinate the effort. The Office of the National Coordinator for Health Information Technology (ONC) is a promising choice given its current involvement in the development of a nationwide health information technology infrastructure. Many of ONC’s goals, such as improving the quality of health care and reducing health care costs, can be applied to people with disabilities. Other goals, such as promoting the management of chronic diseases, directly relate to people with disabilities. Further, ONC is currently involved in strategic planning of the health information technology infrastructure and thus, is well positioned to effectively advocate for disability-related improvements to the developing system.

    A larger effort by the government to build an electronic health record repository would no doubt be of great value to researchers. SSA’s efforts to identify people with disabilities who meet SSDI/SSI medical criteria from such records might provide a good foundation for a broader effort to develop measures of disability and functioning from such records. It is also possible that major health systems with relatively long-standing electronic health record systems (including the Veterans Health Administration) recognize the value of measuring disability and functional status of their enrollees, and are already doing so.

    5. Improve General Accessibility

    As described in Chapter II, currently there is extensive use of administrative data, and many administrative data sources have been matched to both survey and other administrative data sources. But for a variety of reasons, these data are often technically or legally inaccessible to researchers. TAG and FAEP members suggested that administrative data should be released in a more timely manner and be made more user-friendly. Greater user-friendliness could be achieved through improved documentation, technical assistance, and the creation of variables that are useful for research as opposed to program administration purposes. It was also suggested that administrative data access could be facilitated through the use of a contractor to administer data use agreements (under a model similar to that used by the CMS’s Research Data and Assistance Center). To maximize its value, any effort to build a multiagency data workroom would need to be accompanied by a substantial effort to make the data both technically and legally accessible to qualified researchers.

• D. Improve Collection of Longitudinal Information

  • Linkages between survey and administrative data can provide longitudinal information to address some disability data limitations, but longitudinal survey data can also be useful for analyzing many issues that cannot be adequately addressed with administrative data alone. As noted previously, about half of the 40 national surveys we reviewed are longitudinal or have a longitudinal component. Longitudinal data can help researchers to understand the dynamics of disability in a way that is difficult to capture in a cross-sectional survey. Disability is not a static condition; it may grow more or less severe over time, and limitations imposed by a specific condition may change as one’s environment changes over time. Longitudinal surveys are generally more expensive to conduct than cross-sectional ones, both because data are collected over a longer period of time and because efforts must be made to locate sample members over time and minimize loss to follow-up. Budgetary pressures threaten the continuation of many federal efforts, including data collection. Creative methods to maintain longitudinal data collection in the face of limited finances are needed.

    One option for a new survey or for existing surveys is to collect longitudinal information in a manner similar to that planned for the SIPP. The SIPP is in the process of undergoing a re-design, after which its interviews will be conducted annually instead of three times a year. To accurately account for the entire year, respondents will be given an event history calendar to aid in recall throughout the year. Similar methods could be adopted by cross-sectional surveys. For example, in addition to asking if a person has a disability, cross-sectional surveys would gain from also asking when the onset of disability occurred. Retrospective information about other important events surrounding the onset of disability could also be queried, such as consequences of disability onset for employment, income, health care use, and family well-being. Retrospective information about the availability and use of supports thought to mitigate the consequences might also be collected. Potential problems with collecting retrospective data include recall bias and the possible irrelevance of the information collected if the event of interest (like disability onset) occurred a long time in the past. Respondents might have difficulty recalling experiences, and the experiences themselves may no longer be relevant in the current social and policy context.

    Another practical issue that would be associated with studying the dynamics of disability over time is developing measures to capture changes in health and disability status. Unlike factual information such as employment, income, program participation, service use, and other concepts typically measured in existing longitudinal surveys, disability is complex and multidimensional. Currently, little data are available on the validity and reliability of health and disability measures that might be collected via survey over time on the same individuals. Health scales, such as the SF-36, and functional limitation questions with four or five response categories may not be sensitive enough to capture substantive changes in disability status, and so might be of limited use in relating those changes to particular disability-related determinants and outcomes. Improving our ability to efficiently measure and interpret changes in disability status over time might lead to disability questions being added to existing longitudinal surveys.

    New or enhanced longitudinal survey efforts could also provide information on other unanswered disability-related questions. Many unanswered questions identified by federal and state agencies focused on transitions. Several surveys monitor children with disabilities over time as they age into adulthood and others follow the elderly population as they retire and experience declines in functioning, but information about the transitions experienced by working-age individuals with disabilities (for example, surrounding disability onset, employment, and disability program participation) is less available. One government respondent noted that it was difficult to answer the question, “What happens to persons with disabilities after they leave public assistance programs?”

    The PSID has the potential to provide some information on these topics, but the sample sizes are too small to be able to analyze the incidence of many types of disability-related transitions. Although information on working-age individuals before and after they participate in government programs is lacking, the act of applying for a program creates an opportunity to identify individuals in transition who might be the target of data collection efforts. A new effort could sample people who apply to a program (for example, SSDI) and who exit from the same programs. These samples might be used to augment the samples of existing surveys in a manner similar to that described previously for Social Security disability program participants in the SIPP.

    A more ambitious approach would be to develop a longitudinal disability sample from the SIPP itself. That is, the SIPP could be used to identify respondents with disabilities and particularly those who, during the SIPP period, experience the onset of disability or of a medical condition that puts them at high risk for disability. These respondents could be followed for a longer period (for example, 10 years). Similar to the MCBS, new subjects would be added every year (from the current SIPP) and subjects who had completed all interviews would leave. This approach would only work well if the new SIPP sample sizes are sufficiently large, the panels are fielded on a regular basis, and questions in SIPP that are key to selection of the disability sample are maintained over successive panels. In essence, a re-designed SIPP with a special disability sample could become a longitudinal national disability survey.

• E. Enhance Disability-Related Content in Existing Surveys

  • A key issue is that many surveys have very limited and--at the extreme--no questions related to disability. In our correspondences with the staff of agencies that conduct research related to people with disabilities, one respondent suggested that disability be included in all surveys as a basic demographic characteristic, such as gender or race.

    Inclusion of a basic disability variable in all surveys would open up a variety of topics to research on people with disabilities. For example, adding a concrete measure of disability to the CE would allow for studies comparing the spending habits of people with and without disabilities. The inclusion of disability questions in the 2009 AHS has added a new opportunity to use these data for disability research. As noted in Stapleton et al. (2009a), “Adding disability measures to surveys with poor or nonexistent measures is the most important way that disability-relevant content in existing national surveys can be improved.”

    As mentioned previously, among surveys that already include questions to identify people with disabilities, many lack details on the severity of the disability or diversity of conditions. Federal and state agency staff providing input to this study requested that information on disability severity, longevity, onset, and causes be included in more surveys. More information on people with disabilities could also be included by restructuring certain questions. Some surveys inquire about a respondent’s ability to work and include disability only as a response option for a question about why the individual is not working. Including a separate work-limitation question, with inability to work as a response option, would increase the validity and usefulness of the measure. This restructuring could be applied to any question for which disability appears as one of many response options. Researchers would prefer use of a larger stand-alone battery of disability questions, but that would impose a greater burden on the respondents.

    Inclusion of disability-related content, such as service use or barriers to independent living, is another important way to enhance existing surveys. People with disabilities have many unique needs and circumstances that might not be captured by standard questions targeted to people without disabilities. Questions related to work accommodations, accessible public transportation, assistive technology, disability-related costs, and the emotional and social impacts of disability are absent from most existing surveys but would improve the usefulness of surveys for studying disability issues. For example, including content related to vocational rehabilitation on all educational surveys would be useful to answering a question posed by one government agency: “What effect has rehabilitation had on drop-out and graduation rates?” Numerous examples of disability-related content that staff of federal and state agencies find are inadequate in existing surveys were noted in Chapter II (Section C.5).

• F. Augment Samples in Existing Surveys

  • Federal and state agency staff indicated that one way they attempt to address issues related to small survey sample sizes is to pool data across survey years. This is an effective and efficient means for increasing sample sizes when data have been collected consistently over time and it is reasonable to presume that population distributions for relevant variables have changed little. To facilitate these types of analyses, NCHS provides weights and survey design adjustment information to use when multiple years of the NHIS are being pooled. Other surveys, including the MEPS, NBS, CPS, and SIPP are good candidates for pooling multiples years to increase sample sizes. For example, studies have pooled multiple years of the MEPS to study the health care expenditures of people with disabilities (Olin and Dougherty 2006), and multiple years of the NHIS to study SSDI beneficiaries in the 24-month waiting period for Medicare (Riley 2006; Livermore et al. 2010).

    Modifications to survey sample frames and methods might also identify more people with disabilities in surveys. One respondent suggested, “Enhancements to survey sampling frames should be considered as a way to enhance sample size of people with disabilities in existing surveys.” The exclusion of people residing in group quarters or institutions may inadvertently omit a large number of people with disabilities (She and Stapleton 2009). Improvements in the manner with which surveys interview respondents may also help to identify more people with disabilities. People with disabilities may require additional follow-ups to successfully complete a survey compared to people without disabilities. Alternative measures for conducting the survey may be required, such as providing surveys in Braille or verbally for people with vision difficulties.

    Another way to increase survey sample sizes so that particular subpopulations of people with disabilities might be studied is to augment the samples of existing surveys with such individuals. An example of this is SSA’s collaboration with the Census Bureau to include an additional sample of SSDI and SSI beneficiaries in the 2001 SIPP. To increase the number of SSDI and SSI program participants available for analysis, SSA contracted with the Census Bureau to interview a sample of known SSDI beneficiaries and SSI recipients identified from SSA administrative records using the SIPP core questionnaire. This resulted in 2,447 additional interviews of known program participants. By adding this oversample of interviews to the 2,575 program participants already in the sample, the sample size of SSI and SSDI beneficiaries in the 2001 SIPP increased to a total of 5,022 (DeCesaro and Hemmeter 2008).

    The addition of the standard six-question disability series to federal surveys might also offer future opportunities to augment sample sizes in surveys that obtain their samples from larger national surveys. For example, the MEPS obtains its sample from the NHIS. Sample sizes for working-age people with disabilities in the MEPS are fairly small, necessitating the pooling of data across years to study this population. With the addition of standard disability questions to both the NHIS and MEPS, sample sizes of people with disabilities in the MEPS could be augmented by using the disability questions as a screener in the NHIS, and oversampling NHIS respondents with disabilities in the MEPS. Several federal agencies noted unanswered disability questions related to health insurance, health care utilization, expenditures, and effects of the Affordable Care Act that could potentially be addressed with augmented samples and data from the MEPS.

    Another option is for surveys to oversample from identifiable groups with relative high disability prevalence. In the past, the SIPP has used this approach to oversample from low-income households, and the HRS has used it to oversample African Americans. For instance, using ACS data pooled across years, it might be feasible to identify fairly small areas where disability prevalence is relatively high. Those areas could be oversampled for the SIPP.

• G. Field Periodic Supplements

  • Adding a topical supplement to an existing national survey might be a useful approach when a large amount of new information is required or when there is a need to study a specific subpopulation that cannot be easily identified with existing information. In either case, an existing, large national survey could act as the screener. The existing “parent” survey would also provide additional information that enhances the supplement, making an addition to an existing survey more efficient than conducting a stand-alone survey. The existing national survey to be used as the parent survey would need to include disability identifiers; otherwise, screening questions would need to be added. The inclusion of the six-question series on disability in additional federal surveys could expand the potential opportunities to use these questions as screeners for disability modules or supplements to existing national surveys.

    Stapleton et al. (2009a) describe three general models for fielding topical supplements to existing surveys that are currently used in national surveys: topical modules, topical question batteries, and topical surveys. These models can be considered for purposes of conducting a national disability survey, which we discuss in Chapter IV.

    Topical modules are supplementary questionnaires administered during a longitudinal survey that contains information on other topics, such as employment. The SIPP exemplifies this model because it is built around a core of labor force, program participation, and income questions designed to measure the economic circumstances of people in the United States. In addition, the survey was designed to provide a broader context for the analysis of income and program participation dynamics by adding questions on a variety of topics, such as living circumstances and personal assets, not covered in the core survey and that presumably do not change substantially during the short time intervals of the longitudinal data collection. Because the SIPP is designed to collect longitudinal information at relatively short intervals, it is unique in offering many opportunities to survey the same respondents and to spread the burden of collecting more detailed topical information. This is not the case with other large national surveys. Although repeated over time, most large national surveys are cross-sectional and thus offer only one opportunity to identify the subsample of interest and collect the additional topical information; this can substantially increase respondent burden if the topical supplement is large. The CPS, because it is fielded monthly, also offers multiple opportunities within a year to administer a topical supplement and has been used to do so quite frequently. The planned disability supplement to the CPS being developed by DOL is an example.

    Topical question batteries are sets of questions that can be added to a core survey questionnaire but, unlike topical modules, are only asked of a subsample. An example of this model is the BRFSS, where topical supplements can be used in concert with the core national survey and administered in a single interview for a subgroup of people being interviewed. This approach differs from the SIPP topical module in that the topical question batteries are optional and selected for administration at the discretion of the states, which are responsible for administering the BRFSS. Under cooperative agreements with the Centers for Disease Control and Prevention (CDC), each state administers the core BRFSS questionnaire every year. In addition, each year the CDC offers a variety of approved topical modules that can be used by the states at their discretion and cost. States also are permitted to add their own sets of questions, subject to certain procedures and requirements, and at their own expense.

    Topical surveys appear to be stand-alone surveys, but in fact derive their samples from a parent survey and therefore are essentially extensive topical modules of the parent survey. For example, the ATUS sample comes from the CPS, and the MEPS sample is derived from the NHIS. In each, supplemental interviews are conducted separately from the original interviews but the data from the original survey can be combined and used with the topical survey data. The NHIS-D also falls in this category, although unlike the other examples, the NHIS-D was designed as a one-time survey.

• H. Conduct Periodic Surveys of Subpopulations

  • Conducting periodic surveys of specific subpopulations of policy interest, such as special education students, is an important way that disability data limitations are currently addressed. More than half of the 40 surveys reviewed for this report represent such surveys. The need for these types of surveys is driven by the specific information needs of particular agencies and the inability of general population surveys to identify or include in their samples sufficient numbers of particular individuals for which disability information is needed. Medicare beneficiaries, SSI and SSDI beneficiaries, nursing home residents, children, seniors, special education students, veterans, and prison/jail inmates are examples of subpopulations for which surveys have been conducted periodically in the past. Less frequent subpopulation survey efforts have focused on individuals with mental illness or intellectual disabilities, and homeless individuals. Subpopulations of particular interest to federal and state staff and for which disability data are thought to be inadequate are listed in Chapter II (Section C.2).

    Most subpopulation surveys focus on those in a population, rather than those transitioning into or out of the subpopulation, such as applicants. The NLTS surveys are important examples of such a survey; the NLTS population is special education students who are at an age where they are about to transition out of the public school system into adulthood. As noted previously, however, state and federal agency staff indicated there is an information gap surrounding transitions from education to employment, changes in residences, or from institutional to noninstitutionalsettings (and vice versa), entry to and exit from public programs, and across changes in health care systems. Hence, adding special surveys that start with transitioning populations might be of considerable value. A survey focused on transitions would seek to capture people before and after they belong to a given subpopulation. In terms of program participation, potential survey respondents could be identified at the point of program application. The survey could ask retrospective questions at that point, thenfollow these individuals as they become enrolled in the program and continue to follow them after program exit. This would also create an opportunity to survey and compare accepted and rejected program applicants.

• I. Designate a Lead Agency or Group to Coordinate Disability Data Efforts

  • Having an organization to spearhead disability data improvements efforts was viewed by TAG members as an important means to facilitate implementation of all of the options discussed above and also to garner support for a national disability survey (discussed in the next chapter) should one be deemed desirable. TAG members noted that significant improvements in data covering older individuals (via the HRS) were achieved through an active research community and strong relationships between the government and universities. Finding a way to mirror their success in the disability arena would facilitate disability data improvement efforts. Participants believed that the inclusion of the ACS six-question series in several surveys marked a rise in interest in improving disability data and that now is a good time to build on that momentum. Designating a lead organization or agency to advocate for and coordinate such efforts was perceived to be necessary. Proposed organizations include ASPE, NCHS, the Office of Management and Budget, and the National Institute on Disability and Rehabilitation Research.

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