Summary

The Social Security Administration (SSA) asked the Institute of Medicine (IOM) to study its medical procedures and criteria for determining disability and to make recommendations for improving the timeliness and accuracy of its disability decisions. SSA asked the IOM to help in two broad areas, broken down into 10 specific tasks (see Appendix B).

First, SSA asked IOM to recommend ways to improve the use of medical expertise in the disability determination process, including how medical expertise can best be provided to support case adjudication by the 54 Disability Determination Services (the state agencies that make the initial disability determinations for SSA, called DDSs) and in appeals hearings held by SSA at 144 hearings offices around the country, as well as advice on the organization and qualifications of supporting medical experts.

At SSA’s request, IOM addressed tasks related to medical expertise in an Interim Report in December 2005 (Tasks 8-10 in Appendix B). The Interim Report, with its recommendations, appears in Appendix C.

The committee has reviewed and affirmed the findings and 13 recommendations in the Interim Report, except for the requirement in two of the recommendations that psychologists be board certified. In Recommendation 1-2 of the Interim Report, the committee recommended that SSA require board certification of psychologists working for the state DDSs as medical consultants within five years. In Recommendation 1-7, the committee recommended that psychologists called on by administrative law judges to participate in hearings as medical experts also be board certified. The committee realizes that, although board certification has become the norm for physicians, relatively few psychologists are board certified. The



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Improving the Social Security Disability Decision Process Summary The Social Security Administration (SSA) asked the Institute of Medicine (IOM) to study its medical procedures and criteria for determining disability and to make recommendations for improving the timeliness and accuracy of its disability decisions. SSA asked the IOM to help in two broad areas, broken down into 10 specific tasks (see Appendix B). First, SSA asked IOM to recommend ways to improve the use of medical expertise in the disability determination process, including how medical expertise can best be provided to support case adjudication by the 54 Disability Determination Services (the state agencies that make the initial disability determinations for SSA, called DDSs) and in appeals hearings held by SSA at 144 hearings offices around the country, as well as advice on the organization and qualifications of supporting medical experts. At SSA’s request, IOM addressed tasks related to medical expertise in an Interim Report in December 2005 (Tasks 8-10 in Appendix B). The Interim Report, with its recommendations, appears in Appendix C. The committee has reviewed and affirmed the findings and 13 recommendations in the Interim Report, except for the requirement in two of the recommendations that psychologists be board certified. In Recommendation 1-2 of the Interim Report, the committee recommended that SSA require board certification of psychologists working for the state DDSs as medical consultants within five years. In Recommendation 1-7, the committee recommended that psychologists called on by administrative law judges to participate in hearings as medical experts also be board certified. The committee realizes that, although board certification has become the norm for physicians, relatively few psychologists are board certified. The

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Improving the Social Security Disability Decision Process committee therefore modified its recommendation to recommend instead that SSA continue the current requirements for psychologists participating as medical consultants or medical experts and establish a long-term goal requiring that psychologists be board certified. Second, SSA asked IOM to recommend improvements in its Listing of Impairments (the Listings), which are used to screen applicants for quick approval of disability benefits. Specifically, SSA asked IOM to reexamine the conceptual basis of the Listings, consider alternative conceptual models, improve consistency in their application by program decision makers, and recommend a system for keeping the Listings current over time. The body of this report contains the committee’s findings and recommendations concerning the Listings (Tasks 1-7 in Appendix B). CONCEPTUAL MODELS OF DISABILITY When the Social Security Disability Insurance program was originally conceived and implemented, persons with disabilities were considered to be handicapped by their disease or impairment. Conceptually, disability was based on a medical model, in which disability is caused by a disease, injury, or other severe impairment for which the remedy, if any, is medical treatment. Subsequently, the concept of disability has changed in recognition that disability, as distinct from impairment, is not just inherent in the individual and his or her medical condition but is the result of the interaction between the person with impairments and features of the socioeconomic environment in which the person lives, such as the presence or lack of accessible transportation and of practical workplace accommodations. Yet the antiquated medical model of disability continues to be reflected in the definition of disability in the Social Security Act. SSA’S DEFINITION OF DISABILITY Under the Social Security Act, an individual is considered to be “disabled” for Social Security purposes if he or she is unable “to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”1 Further, “[a]n individual shall be determined to be under a disability only if his physical or mental impairment or impairments are of such severity that he is not only unable to do his previous work but cannot, considering his age, education, and work experience, engage 1 Social Security Act, Title II, § 223(d)(2)(A), and Title 16, § 1614(a)(3)(B).

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Improving the Social Security Disability Decision Process in any other kind of substantial gainful work which exists in the national economy….” This definition of disability is complex, and it has medical, functional, and vocational components. A complete and comprehensive assessment of all aspects of the definition would require a detailed clinical evaluation of the underlying medical cause(s) for the impairment; analysis of the expected duration of the impairment (prognosis); a comprehensive assessment of the work-related functional limitations attributable to the impairment, as well as the individual’s remaining functional capacity; a detailed vocational analysis of the individual’s work history and acquired work skills, educational background, and age; and a thorough analysis of the individual’s current vocational prospects. However, SSA does not have the resources to perform such an extensive assessment for every one of the 2.6 million disability applicants who will come through its doors in 2007. THE DISABILITY DECISION-MAKING PROCESS To apply the statutory definition in a way that allows it to manage its caseload, SSA uses a five-step sequential evaluation process when deciding whether an individual is disabled. Only the last step of the process requires a complete, comprehensive assessment of all aspects of the definition of disability. Each of the four steps that precede it is, to some degree, intended to enable SSA to reach a faster decision by looking only at selected aspects of the case. The first, second, and fourth steps identify cases that will be denied without performing a complete assessment of all aspects of the case. The third step identifies cases that will be allowed without a complete assessment. THE LISTINGS The third step of the five-step sequential evaluation relies on the Listings to identify cases that will be allowed. The Listings describe impairments that SSA considers severe enough to prevent an individual from doing “any gainful activity.”2 The “any gainful activity” standard is a stricter standard, i.e., a higher degree of impairment severity, than the “any substantial gainful activity” standard in the statutory definition of Social Security disability. The Listings serve as a screening tool to expedite the identification of individuals who clearly meet the definition of disability in the Social Security Act. Quick identification of obvious cases deserving benefits permits 2 20 CFR 404.1525 and 416.925.

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Improving the Social Security Disability Decision Process SSA to avoid a time-consuming and resource-intensive inquiry into all of the facts of every case. Using the Listings as an administrative expedient, SSA is able to process more cases more quickly and cost-effectively than it would without the Listings. In addition to providing efficiency, the Listings are also intended to ensure that there is a medical basis for the disability and that all applicants receive equal treatment, as well as to ensure adjudicative consistency. The Listings are organized by 14 major body systems (e.g., musculoskeletal impairments, respiratory impairments, neurological impairments). Altogether, there are more than 100 listed impairments. For each body system, the Listings begin with a narrative introduction that defines key concepts used in that body system. The introduction also identifies specific medical findings that may be required to show the existence of an impairment listed in that section. This introduction is followed by the “Category of Impairments” section, which includes the specific criteria (medical signs, symptoms, and laboratory findings) that describe the required level of severity for each impairment listed in that body system. Although a few listings (e.g., certain cancers and amyotrophic lateral sclerosis) are evaluated based on diagnosis alone, most require a diagnosis in conjunction with some sort of assessment of impairment severity, either by the presence of specific clinical findings or by some sort of assessment of functional outcomes. If the evidence in a case establishes the presence of all the criteria required by one of the impairment listings, then the individual “meets” (i.e., matches) that specific listing. However, even if the evidence does not show that an individual meets the exact requirements of a particular listing, the individual can still be found disabled at step 3 of the sequence if his or her impairment is equal in severity to the requirements of a listing, referred to as “medical equivalence.” By identifying a portion of the allowance cases early in the process, the Listings reduce case-processing time. Reduction of case-processing time is one of SSA’s key goals for improved customer service, and concerns with claim-processing time also have been an important factor in a recent major SSA initiative to revise the disability program’s administrative review process. However, SSA is concerned that the Listings may not be as effective a screening tool as they were in the past. In the early days of the disability program, the Listings accounted for more than 90 percent of the initial allowances (SSAB, 2003:7). As recently as the early 1980s, they were the basis for 70 to 80 percent the initial allowances, and they accounted for less than 60 percent of allowances in 2000 (SSAB, 2001:5). According to more recent data supplied to the committee by SSA, the Listings accounted for only 52 percent of the initial allowances in 2004.

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Improving the Social Security Disability Decision Process With more than 2.6 million applications filed annually, approximately 40 percent (1 million) of which are allowed initially, a 1-percentage-point increase of allowances made at step 3 of the initial decision process represents approximately 10,000 fewer cases that must go through the remainder of the decision-making process. FINDINGS AND RECOMMENDATIONS Value and Utility of the Current Listings The committee believes that using the Listings as an administrative screening tool to identify and quickly allow obviously disabled applicants provides significant value and utility to a variety of different constituencies, including claimants, DDSs and SSA, and the general public. The committee could find no compelling reason for SSA to abandon the Listings process. However, the fact that the Listings have value and utility as a decision-making tool does not mean that they cannot and should not be improved. One important improvement would be to address the validity of the Listings as a measure of work disability. The degrees of medical severity described in the Listings should be strongly correlated with not working. However, such a correlation has never been clearly established for most conditions in the Listings, and little work has been done to establish the extent to which the Listings are a valid measure of work disability. SSA began an effort to validate the Listings in 2001. However, this initial work was not continued. The committee believes that there are ways to evaluate the validity of the Listings, even in the absence of an objective “gold standard” for what constitutes disability for SSA purposes. RECOMMENDATION 1. SSA should continue to use the current Listings as a screening test in its disability decision process, but should increase their value and utility by closely examining and monitoring their performance, conducting research to evaluate and improve their effectiveness in expediting awards in obvious cases, and making timely changes in response to these evaluations. Conceptual Models for Organizing the Listings The Listings are based on a medical model, which is not ideal, given what is known about the factors causing disability. However, a better model does not exist at this time. The bases for the Listings are anatomic, diagnostic, and functional, the mix of which varies from listing to listing and body system to body system. As medical treatments and assistive technologies advance, the anatomic and diagnostic bases for the Listings will become less

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Improving the Social Security Disability Decision Process and less useful as markers of disability. Therefore, the committee believes that SSA should begin now to look for better methods of determining disability for Social Security benefits. One alternative to a body-system-based list of diagnoses and impairments would be to develop and apply a generic functional evaluation that does not attempt to assess the severity of impairment but goes directly to the functional capacities of claimants to engage in substantial gainful activity. However, the opinion of the committee is that a generic functional screening tool equal to the complexity of disability does not exist at this time. A potential model for a functionally based screening tool is the current process that SSA uses to identify children applying for SSI whose impairments are “functionally equal” to the Listings. This process, in effect, establishes a universal “functional” listing that applies regardless of the nature of the child’s impairment. A similar approach could be developed for adults, although it would most likely be a substantial undertaking for SSA to develop and validate appropriate functional criteria for adults. Another alternative would be to use SSA’s own program data to identify the characteristics of claims that are highly likely to be allowed and use them as a screen. RECOMMENDATION 2. SSA should continue to monitor advances in assessing disability, and it should support the development of promising alternative approaches to evaluating eligibility for Social Security disability benefits. SSA also should systematically compare the new quick disability determination process with the Listings and with the final determinations of disability. Revising the Listings to Be More Consistent and Up to Date Currently, SSA considers several factors in deciding whether to revise, add, or delete a listing, such as medical advances, experiences of its adjudicators, and input from the public as well as legislative or judicial actions that affect listings. SSA makes use of in-house medical experts, outside experts, and other agency personnel, but it does not make full use of its extensive program data in the Listings revision process. These data could be used to assess aspects of the performance of the current Listings, and to identify circumstances in which a new listing might be appropriate or a current listing is no longer needed. SSA could, for example, identify impairments that are frequently found to be disabling at the last step of SSA’s sequential evaluation process, but for which no listings currently exist. Impairments that are frequently found to be equal in severity to a listing but are seldom found to meet a listing also suggest the possibility of new listings. A sudden decline in an allowance rate might signal an advance in medical treatment

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Improving the Social Security Disability Decision Process that has reduced the disabling effects of a listed impairment, which in turn might prompt revision or elimination of the listing. Feedback One way to help improve the consistency of decision making is to provide better feedback to adjudicators about the decisions they make and that other adjudicators are making. SSA does not systematically analyze its own programmatic data or provide feedback to adjudicators on aggregate results of their decision making. RECOMMENDATION 3. SSA should develop a management information system that combines a balanced quality assurance process to promote consistency and reliability of individual allowances and denials and a program of analysis of aggregate patterns to evaluate consistency and reliability of the Listings. SSA should also develop feedback processes to inform adjudicators and program managers of decision results, including those found by subsequent adjudicators to meet or equal the Listings. External Input Affecting the Listings No matter how reliable and valid the Listings may be at any given moment, they are constantly affected by external trends that sooner or later make them obsolete. These include changes in disease patterns, advances in scientific knowledge and medical practice, advances in assistive technologies, and changes in the workplace affecting workers in terms of job requirements and potential sources of injury. The Office of Medical Policy, the staff component within SSA that is responsible for maintaining the Listings, is small and does not have experts in all the major specialties (although it can draw on the advice of specialists in the federal DDS), so its ability to supply all the necessary medical expertise to the Listing revision process is limited. RECOMMENDATION 4. SSA should ensure that its Office of Medical Policy has the expertise relevant to the full range of listed impairments and has the resources to stay knowledgeable concerning new developments in medicine and rehabilitation, for example, by conducting systematic literature reviews on a periodic basis.

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Improving the Social Security Disability Decision Process Use of Medical Advisory Committees Historically, SSA has used a variety of different advisory committees, advisory councils, and similar groups as a source of expert advice and recommendations on addressing difficult issues. SSA formed an external medical advisory committee in 1955 to create the original Listings. More informal medical advisory groups were used into the 1980s and were part of the efforts to incorporate consideration of pain in the listings, revise cardiac listings, and revise and expand the mental listings. The use of medical advisory groups was stopped when the Federal Advisory Committee Act (FACA) was implemented. However, SSA’s disability programs would benefit from external advice of clinical and other experts on disability determination criteria and procedures, and the involvement of external advisory groups would also serve to increase the understanding and acceptance of SSA disability determination requirements in the medical community. RECOMMENDATION 5. SSA should reestablish a medical advisory committee under the Federal Advisory Committee Act to advise the commissioner on when scientifically based regulations, especially the Listings, should be revised to keep them up to date. Ad hoc advisory committees should be established under the auspices of the medical advisory committee to advise on the revision or addition of specific listings or body systems. The medical advisory committee should be multidisciplinary and include representation from all appropriate constituencies. Responding to Advances in Medical Practice and Technology Medicine evolves in ways that may result in the need to revise a listing, but it also makes more incremental advances that affect the way particular listings are applied. In such cases, the standard of severity in the listing does not change, but the method of evaluating it may. One way SSA has tried to make the Listings adapt better to these kinds of changes is to make them more generic. This approach is helpful and should be pursued. Another way to respond to continuing improvements in methods of treating and evaluating impairments is to use agency rulings (Social Security Rulings, or SSRs) to provide adjudicators with up-to-date methods of obtaining and evaluating evidence and up-to-date guidance in applying the Listings. The committee believes that these efforts, in conjunction with the establishment of a medical advisory committee, can help SSA keep the Listings up to date, while maintaining the important protections embodied in the Administrative Procedures Act.

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Improving the Social Security Disability Decision Process RECOMMENDATION 6. SSA should continue to develop procedures for expediting development of new regulations and fully involving the public and external experts in the regulatory process governed by the Administrative Procedures Act. Agency rulings, which are published in the Federal Register and made available on SSA’s website, should continue to be used to explain and clarify the substantive rules developed in the full regulatory process. Adaptability of the Listings Some individuals may not meet a listing because they do not have access to treatment and the listing states that specific clinical or laboratory findings must exist or persist despite the treatment in order for the listing to be met. Variable access to quality health care services is unfortunate but beyond the capacity of SSA to remedy. Ideally, individuals applying for disability benefits would be evaluated and receive the medical, vocational rehabilitation, and employment services that would enable them to resume working gainfully. Instead, in the current system, many individuals with remediable work limitations are not eligible for medical care or vocational rehabilitation until after they have completed the process of qualifying for cash disability benefits. This requirement obviously disadvantages people without adequate health care coverage, but any unfairness is the result of the social and political system that created these inequities, not the Listings. RECOMMENDATION 7. The committee recommends against attempting to consider variable access to health care at the Listings step in determining disability. It is not strictly a medical issue that can be incorporated easily in Listings criteria. Although medical evaluation is involved in gauging the severity and functional impacts of an untreated condition, the circumstances limiting access to health care and assistive technology should be considered separately. Evaluating Multiple Impairments Finding a combination of impairments equal in severity to a listed impairment justifies an allowance at step 3. Evaluating equivalence to a listing requires a medical assessment of whether the findings related to an individual’s impairments are “at least of equal medical significance to those of a listed impairment.” In practice, determining whether multiple impairments combine to equal listing-level severity medically is very difficult and quite subjective. Given the complexity and subjectivity of this process, and the absence of any scientific analysis of the process, it is a matter of conjecture whether adjudicators’ judgments on equivalence for combinations

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Improving the Social Security Disability Decision Process of impairments are valid or reliable. The committee believes that, unless SSA is able to establish scientifically the value of adjudicator judgments on equivalence in cases involving combinations of impairments, the prudent and most practical way of deciding such cases is to assess the net functional impact that the impairments have. RECOMMENDATION 8. Generally, SSA should not try to determine the medical equivalency of multiple impairments to the Listings at step 3. Such cases should be analyzed functionally. However, research may determine that some common comorbidities, each of a certain degree of severity or more, are typically allowed after going through steps 4 and 5, and these sets of conditions could be incorporated in the Listings to expedite decisions. Integrating Functional Assessment in the Listings In general, the Listings consider functioning in one of two distinct ways—at the body system/organ level (e.g., “cardiac dysfunction”) and at the person level (e.g., “inability to ambulate effectively on a sustained basis for any reason”), which calls for an assessment of the disabling functional consequences of a disorder. Some adjudicators say that the Listings have evolved from supposedly objective, measurable clinical criteria (including organ/body system-level functioning), which can be easily and quickly applied, to more subjective, ill-defined, person-level, functional criteria, which are difficult and time consuming to apply. The earlier listings criteria were no doubt more clinical, shorter, and easier to apply, but there is no evidence that these earlier versions of the Listings were more accurate as a screening tool than more recent versions. Recently, SSA has begun to incorporate function into the Listings in a systematic way. However, the committee is not aware of a generic functional assessment tool that has been empirically validated for all types of impairments, and functional evaluation in the Listings is not systematically based on research on such tools. RECOMMENDATION 9. SSA should undertake a comprehensive assessment of the performance of both medical and functional listings, and should consider function at the Listings step when it can be shown to correlate with inability to perform substantial gainful activity (SGA). SSA should both monitor and sponsor current research regarding the extent to which medical and functional criteria are highly correlated with limitations on performance of SGA.

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Improving the Social Security Disability Decision Process Research to Support the Listings The committee believes that SSA’s research programs should include research on the Listings to improve their evidence base and experiments to evaluate alternative listing criteria and procedures. The development of the Listings, like any regulation potentially affecting large numbers of people, is a major undertaking that takes time. Through the use of experimentation and pilot projects, new listings should be tested before they are finally adopted. RECOMMENDATION 10. SSA, with input from the medical advisory committee, should develop a program of research to support the disability decision process, including the Listings. The research program should include experiments that test revised listings before they are adopted. The Listing of Impairments is a screening test whose effectiveness and utility is measured by its sensitivity, specificity, predictive values, and other criteria. These in turn depend on knowledge of the validity of the test, which calls for a gold standard for comparison, and of the prevalence of listing-level disorders in the population. Therefore, SSA should also support research on the prevalence of common disorders that meet the Listings. This might be done by supplementing existing surveys, such as the National Health and Nutrition Examination Survey or the Behavioral Risk Factor Surveillance Survey. RECOMMENDATION 11. SSA, in conjunction with other agencies that assist persons with disabilities, should conduct a periodic, nationally representative sample survey of the population to determine the distribution and extent of severe impairments that might meet the Listings. This might be done by supplementing existing surveys. The results would be useful for program planning and for evaluating the effectiveness of the Listings and other aspects of the disability decision process. REFERENCES SSAB (Social Security Advisory Board). 2001. Charting the future of Social Security’s disability programs: The need for fundamental change. Washington, DC: SSAB. Available: www.ssab.gov/Publications/Disability/disabilitywhitepap.pdf (accessed November 17, 2005). SSAB. 2003. The Social Security definition of disability. Washington, DC: SSAB. Available: www.ssab.gov/documents/SocialSecurityDefinitionofDisability_002.pdf (accessed November 17, 2005).

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