7
Recurring Themes and Issues

The purpose of this workshop was to bring to the table expert perspectives from many disciplines on measuring functional capacity for work as it relates to the Social Security Administration's (SSA) disability decision process research. A large array of themes and issues were discussed during the workshop. The committee heard several interesting proposals and suggestions that are very important for disability policy, and many go beyond the committee's mandate.

Some of the key issues and recurring themes relevant to the committee's mandate that surfaced throughout the workshop discussions are described here.

DEFINITIONAL AND MEASUREMENT ISSUES

The definition of disability varies across the different public and private programs depending on the purpose of the program. The purpose of SSA's disability programs is not to deliver services but to provide monthly cash benefits to replace part of earnings lost because of severe medical impairments that make individuals unable to work for a long time. SSA has to make millions of decisions every year on disability benefits. It therefore needs a decision process that is defensible, less complex, and has more objectivity and specificity than the process currently in place. The revised process has to be implemented nationally.

SSA has to be very clear what concepts it is attempting to measure and clearly define them before taking steps to measure them. Often similar terms are used to refer to different things. For instance, across various programs and surveys, disability is defined very differently. As long as this ambiguity continues, there will be serious problems in moving forward in the area of disability deter-



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Measuring Functional Capacity and Work Requirements: Summary of a Workshop 7 Recurring Themes and Issues The purpose of this workshop was to bring to the table expert perspectives from many disciplines on measuring functional capacity for work as it relates to the Social Security Administration's (SSA) disability decision process research. A large array of themes and issues were discussed during the workshop. The committee heard several interesting proposals and suggestions that are very important for disability policy, and many go beyond the committee's mandate. Some of the key issues and recurring themes relevant to the committee's mandate that surfaced throughout the workshop discussions are described here. DEFINITIONAL AND MEASUREMENT ISSUES The definition of disability varies across the different public and private programs depending on the purpose of the program. The purpose of SSA's disability programs is not to deliver services but to provide monthly cash benefits to replace part of earnings lost because of severe medical impairments that make individuals unable to work for a long time. SSA has to make millions of decisions every year on disability benefits. It therefore needs a decision process that is defensible, less complex, and has more objectivity and specificity than the process currently in place. The revised process has to be implemented nationally. SSA has to be very clear what concepts it is attempting to measure and clearly define them before taking steps to measure them. Often similar terms are used to refer to different things. For instance, across various programs and surveys, disability is defined very differently. As long as this ambiguity continues, there will be serious problems in moving forward in the area of disability deter-

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Measuring Functional Capacity and Work Requirements: Summary of a Workshop mination. As Dr. Norwood pointed out, measurement can only take place when the concepts are carefully defined and field tested. In recent years, survey researchers have recognized that cognition and stakeholders should play important roles in survey design, and obtaining information on disability is no exception. The second interim report of this committee recommended that SSA establish a cognitive laboratory for the Disability Evaluation Study (DES), disability decision process research, and for other purposes of the agency. ISSUES IN ASSESSMENT OF FUNCTIONAL CAPACITY TO WORK Self-reporting could be part of the assessment, possibly as a screening tool. It could improve the quality of the process if it is viewed as participation of the individual in the assessment, which, in turn, may make denial of benefits more acceptable to applicants. Although recent research has shown that it is possible to validate self-reporting of the ability to do work, self-reporting of performance is not as straightforward as some may suggest. Testing measurements do not exist at the present time that give reproducible, valid, sensitive, and low-cost assessments that permit classifying persons as unable to work, particularly if assistive technology and other accommodations are taken into consideration. Also, answers to self-report questions may depend on the context and the respondent's feeling about the safety of the environment. Various dimensions must be considered, including the physical, cognitive, degree of training and education, work history, and motivation. Disability is not a permanent or static state and therefore, assessment at one point in time is not sufficient. The conditions of disability change over time, as do the skills and demands of work in the labor market. Therefore, when functional capacity measures are developed and their ability to measure the characteristics of functioning determined, it is important to distinguish between measures currently configured around the traditional physical, psychological, and social functioning dimensions and something as hard to assess as the ability to keep up with constant change in the workplace. There is also the difficulty of disentangling functional requirements and work requirements. Linking work requirements with functional assessment measures is central to SSA's disability determination. SSA plans to use the various demands for work from Occupational Information Network (O*NET). O*NET is being developed under contract with the Department of Labor (DOL) as a replacement for the Dictionary of Occupational Titles. While O*NET is very useful for DOL's purposes, SSA's purpose in defining functional capacity to work is very different from the purposes and uses of the DOL. Difficult measurement problems exist in relation to labor demands associated with jobs, and there are serious concerns about whether O*NET can actively capture the work environment for the purposes SSA intends. Moreover, O*NET was designed for

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Measuring Functional Capacity and Work Requirements: Summary of a Workshop people who do not have serious impairments and focuses on ''average" abilities required for a job. It may still work for SSA and probably represents an improvement over what the agency has today. But a great deal more careful research and experimentation is required to evaluate what functional capability to work really means and how it will be applied to people with disabilities. MOTIVATION, WORK ENVIRONMENT, AND ACCOMMODATIONS The roles of motivation, work environment, and accommodations as factors in a person's ability to work and the importance of considering these factors were recognized. However, the environment of the applicant and that applicant's particular job are also important considerations and are applicable under the ADA and other service provision statutes. These factors are not applicable under the SSA statute. The SSA disability program is about providing monthly cash benefits to replace part of lost earnings; it is not about delivering services to people with disabilities. Motivation is important in whether people continue to work or not, especially if enabling factors are present, such as assistive technologies and reasonable accommodations. Functional assessments and motivation are intertwined. If SSA goes through with its plan to make greater use of functional measures in its redesigned process, the effect of motivation on the outcomes of functional assessment must be carefully appraised. Also, increasing consideration of environmental factors in the determination process could result in a more, not less, complex process than intended. Such a system will make uniformity of decisions more difficult to achieve, which, in turn, could undermine political support for the program. Several participants felt that the workshop did not adequately address issues such as discrimination and the broader influence of environment; at the same time, they recognized that those issues are not germane to implementing Titles II and XVI of the Social Security Act for disability benefits. MEDICAL LISTINGS AND THEIR ROLE IN THE ASSESSMENT PROCESS Efforts to shift SSA's assessment model away from the medical evidence to focus more on functional assessment are viewed by some with caution. However, the process of determining disability is not an either-or situation; the distinction between medical and functional assessment of disability is a false dichotomy. Diagnostic information is viewed by virtually everybody as highly objective, but determining a diagnosis is not always easy. Function reflects how the whole person is operating, taking into account work experience, education, and other matters that influence ability to work beside the clinical diagnosis. Therefore, a bal-

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Measuring Functional Capacity and Work Requirements: Summary of a Workshop ance of approaches is needed that includes medical assessment as well as objective functional assessment of disability for the purpose of employment. FUNCTIONAL ASSESSMENT IN OTHER COUNTRIES' PROGRAMS The United States can learn from the experience of other countries and the private sector programs in this country. Functional evaluation is an important way to determine a person's disability to work in certain circumstances in all the programs discussed. But ultimately policy questions override technical issues of assessment. For example, even in countries where disability programs include partial benefits determination, pressure is strong to give full benefits to people who are evaluated as partially disabled if they are not fully employed. In the U.S. private sector, two different concepts of assessment are employed: one in the case of disability benefits being granted under a contractual obligation, the other where benefits are awarded at the discretion of the insurer. The first decides if the person meets the test of disability to get earnings replacement benefits. The second assessment uses different criteria to determine what additional services the person should have to help him or her get back to work. One of the primary criteria of this second assessment is the person's motivation to return to work. CONCLUDING COMMENTS The committee's mandate includes the examination of the results of research by SSA relating to the disability decision process, including research on functional assessment instruments for the planned DES. This workshop was designed to identify and explore many complex issues relating to the measurement and assessment of functional capacity to work by persons with disabilities. Over the course of the workshop, diverse ideas, suggestions, and policy options were presented and discussed. These are elucidated in the key issues identified during the discussions and in the recurring themes. Workshop participants generally agreed that there is no one instrument available to assess the functional capacity to work that could be incorporated in the DES or in the disability decision process. In fact, much uncertainty exists on the matter of measuring a person's ability to work. SSA needs to test and make incremental changes in the current disability decision process, rather than attempt to develop a whole new process all at once. Many participants were of the opinion that more research and experimentation are needed in this area. These opinions are in accord with the recommendations of the committee set forth in its second interim report to SSA.