Disability is a dynamic process that can fluctuate in breadth and severity across the life course and may or may not limit ability to work. Disability is not a static event because it is the adaptation of a medical condition in the environment in which one lives. It needs to be monitored, measured, and evaluated on a regular basis to understand the growth in the Social Security Administration’s (SSA) disability programs, estimate the current and future prevalence of disability, ensure an effective and efficient system of determining program eligibility, and maintain fiscally responsible administration of the programs.
During the past two decades, the Social Security Disability Insurance (SSDI) program and the Supplemental Security Income (SSI) program have experienced an unexpected, rapid growth.1 More people are receiving disability benefits today than ever before. With the exception of a period in the late 1970s and in the early 1980s, the number of beneficiaries on the rolls has increased steadily as the growth in awards has outpaced terminations. The mix of beneficiaries also has been changing. In the past, people entering the programs were more likely to be over 50 years of age
suffering from conditions of the circulatory system or disabling musculoskeletal conditions. In recent years new beneficiaries are more likely to be younger and have mental impairments. They are likely to remain on the rolls longer.
Many factors have shaped the disability programs over the years, including economic conditions; the changing nature of work; the maximum level of gainful activity allowed for people on disability; the incentives and increased outreach by SSA and disability advocates; legislative actions, court decisions, and administrative initiatives undertaken by SSA in the way disability decisions are made; public perception about the ease of qualifying for benefits; eligibility for medical benefits through Medicare or Medicaid; demographic composition and characteristics of the population; and the types of impairments of applicants that are recognized for disability cash benefits. However, the impact of any one factor on the demand for, and the provision of, disability benefits is difficult to determine definitively in the absence of data.
The challenge for SSA is to acquire these data and use them to manage the disability programs more effectively. The disability rolls are projected to grow over the coming decades as the baby boom generation reaches the age of increased likelihood of developing disabilities. The gradual increase from 65 to 67 in full retirement age also means that disabled workers may remain on the disability rolls for two additional years before converting to the old age survivor benefits. Ongoing and future research using new data sources should provide information about current enrollment in disability programs and allow projections of future growth and program costs. The results should lead to clearer and more workable policies, rules and guidelines to operate its programs.
In 1996, SSA requested that the Institute of Medicine (IOM), in collaboration with the National Research Council’s Committee on National Statistics (CNSTAT) conduct an independent review of the statistical design and content of the disability survey under development (the National Study of Health and Activity (NSHA)) and of its research plan for the redesign of the disability decision process. The committee’s specific tasks include, but are not limited to, the following:
review the scope of work for the NSHA request for proposal and the design and content of the survey as proposed by the survey contractor;
review and evaluate the preliminary design of the NSHA (the protocol developed by Westat, Inc.) and subsequent modifications
made by SSA. Identify statistical design, methodological, and content concerns, and other outstanding issues, and make recommendations as appropriate;
review SSA’s research plan and time line for developing a new decision process for disability, and offer comments and recommendations on direction to the research; and
review all completed research including, but not limited to, reviewing research into existing functional assessment instruments conducted under contract to SSA by Virginia Commonwealth University, and provide advice and recommendations for adopting or developing functional assessment instruments or protocols for the redesigned disability process and NSHA.
Realizing that some key components of the research and testing of the NSHA design were behind schedule, SSA extended the original four-year contract period for an additional two years. Also, SSA informed the committee in late 1999 that it would no longer pursue the development of the new decision process as proposed in its disability redesign plan; instead it had decided to focus on improving the current process.
To meet its responsibilities, the committee reviewed an extensive body of research literature and other relevant reports, heard from a number of experts in the field, and commissioned several background papers from experts. The committee held two large workshops to obtain input from a wide range of researchers and other interested members of the public and to augment its knowledge and expertise by more focused discussion on issues of functional capacity and work requirements and survey measurement of work disability. Throughout the study the scope and extent of the committee’s review has depended on what was initiated or completed and what SSA made available to the committee.
The committee’s review of the NSHA and the research plan for the redesign of the disability decision process represent two separate areas of study. For the most part, therefore, they are discussed separately in this report. Also, the review of the redesign initiative is limited to reviewing the research under way and planned for the redesign of the disability decision process, which is only one element of SSA’s total effort to reengineer the disability claims process.
Recognizing the need to provide SSA with timely advice, the committee issued three interim reports with detailed technical recommendations on topics that needed immediate attention by SSA (see Chapter 1).
The committee’s major findings and conclusions based on this review and its deliberations are summarized below, followed by the text of all the recommendations.
FINDINGS AND CONCLUSIONS
Conceptual Issues in Defining Work Disability
There is no agreement on the definition and measurement of disability. The meaning assigned to the term depends on the uses to be made of the concepts. SSA’s focus in both the SSDI and the SSI programs is on work-related disability, as defined in the Social Security Act. It defines disability (for adults) as the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment that can be expected to result in death or that has lasted, or is expected to last, for a continuous period of not less than 12 months. An individual’s physical and mental impairment(s) must be of such severity that he or she not only is unable to do the previous work but cannot, given the person’s age, education, and work experience, engage in any other kind of substantial gainful work that exists in the national economy, regardless of whether such work exists in the local area, or whether a specific job vacancy exists, or whether the person would be hired if he or she applied for work.
The Social Security definition of disability was developed in the mid-1950s at a time when a greater proportion of jobs was in manufacturing and more required physical labor than today. It was therefore expected that people with severe impairments would not be able to engage in substantial gainful activity. Over the years, many changes have occurred: the nature of work has shifted from manufacturing toward service industries; medical and technological advances have made it possible for more severely disabled persons to be employed; and in recent years, public attitude also has changed as reflected in the enactment of the Americans with Disabilities Act of 1990 (ADA).
In recent years the concept of disability has shifted from a focus on diseases, conditions, and impairments per se to more on functional limitations caused by these factors. Critics suggest that the SSA’s definition of disability and its process for determining program eligibility have not kept pace with the changes. The committee recognizes the administrative difficulties involved in paying more attention in the disability determination process to the physical and social factors in the work environment. Moreover, it might require major shifts in the orientation of the Social Security disability programs to ways to influence the environment in which the applicant might work and to “return-to-work” activities, and might ultimately involve changes in SSA’s implementing regulations.
Work Disability Monitoring System
Managing SSA’s disability programs and adapting them to the evolving needs of Americans with disabilities require ongoing data collection with instrumentation that can be updated to reflect any future changes in either conceptual and measurement issues or SSA’s eligibility protocol. Only then can analysts and policymakers have the information necessary to understand and predict the impact of changes in the environment on an individual’s propensity to apply for benefits. The committee therefore recommends that the Social Security Administration develop an ongoing disability monitoring system, building from its experience with the NSHA. Such a monitoring system should consist of (1) a periodic, comprehensive, and in-depth survey to measure work disability; and (2) a small set of core measures in the intervening years derived from other surveys, reinterviews, and/or administrative data.
Such a system should provide SSA with data needed to respond to a variety of policy and planning issues including, but not limited to, the following: the size, distribution, and characteristics of the working population with disabilities; demographic trends; labor market dynamics; changes in economic conditions; needs of minority and special populations with disabilities; quality of life for disabled workers; functional status of people with disabilities; role of the states; and legislative, regulatory, and judicial impacts on disability programs.
To ensure the utility of a monitoring system for policy decisions and implementation SSA should establish a clear set of information objectives in developing the substantive content of the monitoring system. The design of a disability monitoring system must consider the information needs of the system and the impact of alternative design options on meeting analytic goals. These options can be arrayed along lines of richness of the data, quality of the data, and costs. Resources and changing policy needs may dictate many of the system’s design features and selection of the design options and might include
sponsoring surveys at frequent intervals based on self-report data from a reduced set of disability measures;
funding additional survey questions, suitable for estimation of the size of the population eligible for disability benefits, as part of, or supplement to, an ongoing household survey;
conducting longitudinal data collection;
forming a partnership with other ongoing surveys;
linking survey information with administrative databases; and
conducting ad hoc special studies on specific emerging policy issues and to explore other questions that do not need continuing
data. For example, a follow-up survey of applicants and a survey of employers and people with disabilities might be conducted to obtain information on accommodations that employers provide.
To develop a monitoring system SSA needs to set up a multiyear planning period to systematically design and establish the monitoring system. The monitoring system should be designed with sufficient flexibility to accommodate the evolving medical, legal, social, and policy needs; to make the best use of the design and data from existing federal surveys; and to ensure the availability of sufficient qualified research staff to design and oversee the system.
The committee recognizes that despite its many benefits, developing and implementing the recommended disability monitoring system raises several important issues that would require careful examination and resolution. Many of these issues relate to conceptual definition, method, timing, collaboration with partner agencies, and resource requirements. The committee suggests a phased three-year planning period starting in 2003. Also, SSA should establish a continuing, external group of technical experts for the planning and implementation of the recommended disability monitoring system.
Survey Measurement of Disability
The National Study of Health and Activity is a complex, national, sample survey designed to estimate the number and characteristics of a broad range of working age people with disabilities that affect their ability to work and carry out activities of daily living. SSA has contracted with Westat to conduct the survey. In its review of NSHA, the committee focused on measurement issues and on the adequacy of the research design and its implementation plan.
Time Demands to Achieve Survey Quality
Careful survey design and measurement require considerable development and field-testing prior to implementation. Cost savings that appear to arise when work is rushed are illusory. The original schedule for the conduct of NSHA did not permit deliberate and rigorous decisions about revisions of the design, procedures, or questionnaire content. The rush to launch the national survey has caused serious logistical inflexibility during the various phases of the survey.
An example of inadequate time for the developmental work and testing is the pilot study. SSA originally planned to complete developmental work and conduct the pilot six to nine months after award of the contract for the survey. In response to a recommendation by the committee in its
first interim report, SSA decided to conduct a large, comprehensive pilot study. However, little time was allowed in the schedule for research, development, testing, and making modifications. Decisions had to be made throughout the process, and it became obvious that insufficient time was allowed to resolve issues and test alternatives. As a result of the pilot study experience, the data collection plans are being restructured, and the mode of data collection changed because of poor results with the random digit dialing (RDD) sampling frame.
The committee understands that SSA is already addressing many of the issues raised by the committee in this report. It notes that recently SSA has approved significant additional time to the schedule to evaluate the results of the pilot study and to test alternative solutions to problems before starting the national study.
Not allowing sufficient time for research, development, and testing prior to launching a major complex survey has resulted in the need to repeatedly revise the timetable for developing and conducting the survey. The most recent revised schedule available to the committee called for the “end-to-end” test data collection from December 2001 to February 2002; dress rehearsal data collection from December 2002 to January 2003; and the main study to start early in 2003. Thus, the survey originally planned for mid-2000 is now scheduled to start in 2003 and assumes a multiyear data collection plan.
Issues Associated with Survey Measurement of Disability
The experience to date with NSHA and other similar surveys indicates that measurement issues related to work disabilities are complex. The complexity stems, in part, from differences in conceptual models of the enablement–disablement process and alternative interpretations of the various conceptual models. The various constructs do not necessarily identify the same population.
The committee underscores the need for the development of objective measures of both the physical and the social environment. Toward this end, the committee notes the need to develop and test questions concerning social climate, barriers, and stigma. While these questions are especially important for those with mental illness, they are relevant also for, and should be asked of, all persons with disabilities.
Larger samples reduce the uncertainty that the survey results will depart from those in the full target population. Since the committee’s first interim report, it has raised questions about the adequacy of the sample size targets and especially about the allocation of people among the four subgroups established by SSA—nonbeneficiaries with severe disabilities, persons with significant but lesser impairments, nondisabled persons,
and current beneficiaries. The committee is concerned that the targeted sample sizes may not support SSA’s requirements for estimation and analytical purposes. It has not seen the logic behind these targeted sample sizes. The rationale and plans for analysis were never provided to the committee.
In its plans for achieving the targeted sample sizes, SSA has assumed response rates of about 90 percent for the various components of the NSHA. The committee believes that the expected response rate may be overly optimistic, especially for a population with disabilities. Even if these planned sample sizes can be achieved, the cells very likely will be much too small, especially if SSA stratifies for analytical purposes on more than one disabling condition and/or demographic and socioeconomic characteristics such as age, gender, and minority status, or working nonbeneficiaries with specific disabling conditions. The committee has recently learned that SSA is rethinking these targets based on the evaluation of the pilot study results.
The committee has repeatedly stated in its interim reports and again in this final report that the NSHA, if well designed, could be the cornerstone for long-term disability research. However, the value of the information from any cross-sectional survey diminishes with time. It is, therefore, critical that SSA update the comprehensive database regularly.
Improving the Disability Decision Process
The goal of SSA’s research plan to redesign the disability decision process was to devise a more efficient and more accurate method for making timely determinations of disability for Social Security claimants. Early in the study, the committee conducted a preliminary review of the general features and directions specified by SSA in its research plan and of the individual research projects completed and under way within the research plan. In an interim report of its findings, conclusions, and recommendations, the committee recommended that SSA adopt a rigorous research design process and develop, early in the research, measurable criteria and validation plans to enable SSA to make the ultimate judgments on whether or not the proposed changes would yield the desired results.
SSA concurred with some of the committee’s conclusions and recommendations. However, rather than undertaking the measures recommended by the committee, SSA decided it would no longer actively pursue the redesign of the disability decision process. Now it plans to improve the current process, focusing at this time on updating the medical listings.
Unfortunately, the committee finds that several of the key issues it had identified with regard to SSA’s research plan for redesigning the
disability decision process must also be addressed in activities undertaken to improve the current process. Therefore these issues are reemphasized in this report.
Baseline Evaluative Criteria
Regardless of whether SSA attempts to redesign and develop a new disability decision process or leaves the current process in place and makes changes within the individual components of the sequential process, it needs to establish measurable criteria for assessing the current process. Data should be analyzed in the context of the established criteria in order to identify the nature of the problems in the current process. Although there is no “gold standard” for identification of individuals who are eligible for disability benefits, the committee recognizes that some criteria are needed to assess how accurate are the current determinations of disability. In reviewing the research proposals and other documents related to the redesign the committee found no indication that SSA had conducted any baseline analysis with predetermined criteria. Unfortunately SSA appears to be going down the same path now. The committee reiterates its earlier position and recommends that before making the changes in the current decision process, SSA should establish evaluative criteria for measuring the performance of the decision process, conduct research studies and analyses to determine how the current processes work relative to these preestablished criteria, and then evaluate the extent to which change would lead to improvement.
Since SSA is devoting its attention to updating the Medical Listings component of the decision process, this recommendation is most applicable to the Listings. However, the committee notes that the Medical Listings apply only to one step (step 3) of the five-step sequential evaluation process for determining disability. The baseline evaluation should ultimately evaluate the total process and not just one component.
Assessing Vocational Capacity
The Dictionary of Occupational Terminology (DOT) has served as a primary tool for determining whether a claimant has the capacity to work. However, the Department of Labor (DOL) is no longer updating the DOT. Although the replacement classification system, the Occupational Information Network (O*NET), will be very useful for DOL’s purposes, it will not meet SSA’s needs to define the functional capacity to work without major reconstruction. Barring some resolution, SSA will be left with no objective basis upon which to justify decisions concerning an individual’s capacity to do jobs in the national economy. SSA might be cast back into
the era in which it relied extensively on the testimony of “vocational experts” or their written evaluations.
Moreover, SSA has not updated the research base on the effect of age, education, and work experience on work disability. The research base was used in developing the medical–vocational guidelines of 1978. Since then much has changed with regard to the relative importance of each of these factors. As part of the initiative to redesign the decision process, SSA included in its redesign research plan an evaluation of the effect of vocational factors—age, education, and work experience—on the ability to work or adapt to work in the presence of functional impairment. A review of existing knowledge concerning vocational factors and their impact on the ability to perform jobs in the national economy raised challenging questions about the continuing validity of the approach taken by SSA’s existing regulations. The review suggested a critical need for research designed to validate the use of vocational factors in SSA’s disability decision process.
Over the past two decades, the number of disability beneficiaries in the working age population has risen steadily. Although the number of applicants for benefits has increased only moderately, the number of new beneficiaries has nearly doubled. Disability allowance rates (awards as a percentage of applications) have varied over time from 31.4 percent in 1980 to nearly 47 percent in 2000.
Variations in allowance rates occur for several reasons. For example, SSA’s standards for judging claims differ over time. Dramatic reductions in allowance rates occurred when standards were abruptly tightened in 1980 and then subsequently relaxed. Significant differences are observed in allowance rates across states, between Disability Determination Service (DDS) decision makers, and between DDSs and administrative law judges. The allowance rate is also influenced by legislative changes as well as court decisions, and the adequacy of resources to process and review cases. Increased research is needed to explain these variations and whether they are predictable.
The objectives of the current disability decision process are to attempt to make decisions that are consistent with the statutory definition of disability as consistently, expeditiously, and cost-effectively as possible. Recent legislation—the Ticket to Work and Work Incentives Improvement Act of 1999 (P.L. 106-170)—suggests that Congress is increasingly interested in the return to work model and is prepared to have SSA experiment with some alternative strategies that might facilitate the pursuit of work rather than benefits. The committee concludes that SSA should ini-
tiate a research program for testing decision process models that emphasizes rehabilitation and return to work.
Enhancing SSA’s Research Capacity
Throughout this report the committee recommends major research efforts to understand disability programs’ growth and to effectively and efficiently administer these programs. Such research includes research on the measurement of work disability in a survey context, evaluation of the role of the environment and vocational factors in determining work disability, evaluation of functional capacity of applicants for disability benefits, and testing decision process models that emphasize rehabilitation and return to work. The committee emphasizes that without the infusion of new resources, in terms both of dollars and recruitment of qualified researchers, such research cannot be accomplished.
Establishing and maintaining high-quality and relevant data systems require a sufficient and capable intramural research staff that is diversified across disciplines. The current impoverished research capacity of SSA not only affects the timely analysis of data collected, but also leads to an inability to anticipate important issues and respond to them. The intramural staff for disability research and statistics has to be substantially expanded and diversified to implement the recommendations in this report.
Moreover a balanced program of intramural and extramural research is needed. An extramural research program, however, places its own demands on the agency’s research staff. Oversight responsibility rests with the agency for careful evaluation of the work of the external researchers to ensure its quality, adequacy, and appropriateness. The committee also believes that a strong peer-reviewed extramural program is needed in the social insurance area. SSA should expand and diversify its extramural research program to include a balance of contracts, cooperative agreements, and investigator-initiated grants.
As this report makes abundantly clear, SSA has been given a difficult task and dwindling resources to deal with it. The situation will get worse, not better, in light of the anticipated growth in the demands on the program as the baby boom generation reaches the age of increased likelihood of disabilities. Major rethinking of the disability program is required. Little doubt exists that the current system is inadequate. The fundamental problems of Social Security’s disability decision process are not adequately reflected in the agency’s research agenda. If not corrected, this situation will impair the ability of SSA to meet its policy needs in the twenty-first century. Without sufficient resources, however, SSA cannot accomplish this forward-looking agenda.
The committee’s key message in this report flowing from its contract mandate is that SSA desperately needs a long-term, systematic research program to address the growing demands on its disability programs and to provide the basis for improvements in the disability determination process. For many years, disability policy has been guided largely by court decisions and other pressures rather than by well-thought-out principles. No single source of policy has existed to which decision makers can turn for direction.
Although during the course of its study the committee identified much that needed changing, and continues to be concerned about some of the decisions made by SSA, it recognizes that SSA has made several modifications in response to its recommendations for improving the National Study of Health and Activity. The committee believes that the blueprint for action that it recommends for developing and implementing a disability monitoring system for Social Security programs, and for needed research relating to improving the disability decision process, will contribute toward a significantly improved and efficient system of measuring and monitoring work disability that will better inform public policy and serve the public. This blueprint is worthy of full funding and adequate staffing support by both the Congress and the executive branch of the government.
On the basis of its findings and conclusions the committee provides four categories of recommendations: conceptual issues in defining disability, survey measurement and monitoring of disability, improving the disability decision process, and enhancing research resources. The text of the committee’s recommendations, grouped according to these categories follows, keyed to the chapter in which they appear in the body of the report.
Recommendation 3-1: The committee recommends that the Social Security Administration develop systematic approaches to incorporate economic, social, and physical environmental factors in the disability determination process by conducting research on:
Survey Measurement and Monitoring of Disability
Recommendation 4-1: The committee recommends that prior to undertaking any future large-scale data collection effort, the Social Security Administration should allow for sufficient time and provide adequate resources to systematically:
Recommendation 5-1: The committee recommends that the Social Security Administration develop an ongoing disability monitoring system building from its experience with the National Study of Health and Activity.
The committee further recommends that the Social Security Administration establish a clear set of objectives for guidance in developing and implementing the substantive content of the system.
Recommendation 5-2: The committee recommends that the disability monitoring system consist of
SSA should collaborate with other federal agencies on the design and implementation of the monitoring system.
Recommendation 5-3: The committee recommends that the Social Security Administration establish a continuing, external technical committee of experts for the planning and implementation of the recommended disability monitoring system.
Improving the Disability Decision Process
Recommendation 6-1: The committee recommends that prior to making the changes in the current decision process, SSA should
Recommendation 6-2: The committee recommends that the Social Security Administration conduct research on
Recommendation 6-3: The committee recommends that the Social Security Administration initiate a research program for testing decision process models that emphasizes rehabilitation and return to work.
Enhancing Research Resources
Recommendation 7-1: The committee recommends that the intramural staff for disability research and statistics should be substantially expanded and diversified to implement the recommendations in this report.
Recommendation 7-2: The committee recommends that the Social Security Administration (SSA) expand and diversify its extramural research program to include a balance of contracts, cooperative agreements, and investigator-initiated grants. This broadened research program would prepare the SSA for the anticipated growth in the demands on the disability programs and to bring about the needed fundamental changes in its disability programs.