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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2019. Functional Assessment for Adults with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25376.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2019. Functional Assessment for Adults with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25376.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2019. Functional Assessment for Adults with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25376.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2019. Functional Assessment for Adults with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25376.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2019. Functional Assessment for Adults with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25376.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2019. Functional Assessment for Adults with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25376.
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1 Introduction The U.S. Social Security Administration (SSA) provides disability benefits through the Social Security Disability Insurance (SSDI) and the Supplemental Security Income (SSI) programs. The SSDI program, established in 1956, provides benefits to eligible adults with disabilities who have paid into the Disability Insurance Trust Fund, as well as to their spouses and adult children who are unable to work because of severe long-term disabilities. Enacted in 1972, SSI is a means-tested program based on income and financial assets that provides income assistance from U.S. Treasury general funds to adults aged 65 and older, individuals who are blind, and adults and children with disabilities. As of December 2017, SSDI had approximately 10.4 million beneficiaries and SSI about 7.1 million recipients who were classified as blind or disabled (SSA, 2018a,b). To receive SSDI or SSI disability benefits, an individual must meet the statutory definition of disability, which is “inability to engage in any substantial gainful activity [SGA] 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 In determining whether the definition of disability is met for an adult, SSA uses a five-step disability evaluation process, described in detail in Chapter 22, which includes consideration of the individual’s functional abilities relevant to work. STUDY CHARGE AND SCOPE Seeking to ensure consistency and accuracy in its disability evaluation process, SSA in 2017 asked the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine to convene a committee of relevant experts to provide findings and conclusions regarding the collection of information and assessment of work-related functional abilities (see Box 1-1 for the committee’s Statement of Task). The 15-member committee included experts in the areas of physical medicine and rehabilitation, occupational medicine, internal medicine, mental health, ergonomics, occupational therapy and vocational rehabilitation, social and behavioral science, disability law and policy, measurement and survey methodology, 1 42 U.S.C. 423; see also 20 CFR 404.1505; 20 CFR 416.905. 2 See 20 CFR 404.1520; 20 CFR 416.920. PREPUBLICATION COPY: UNCORRECTED PROOFS 1-1

1-2 FUNCTIONAL ASSESSMENT FOR ADULTS WITH DISABILITIES epidemiology, and biostatistics (see Appendix D for biographical sketches of the committee members). In carrying out this study, the Committee on Functional Assessment for Adults with Disabilities was asked by the sponsor to perform several specific tasks, including identifying and describing evidence-based methods to collect information about an individual’s physical and mental functional abilities relevant to work requirements; discussing the types of information that support findings of limitations in functional abilities relevant to work requirements; and, in the context of disability assessment, describing for functional abilities relevant to work requirements changes related to the progression of common disease processes, including but not limited to back disorders, cardiac impairments, and depression. In addition to these three conditions, the committee chose to address traumatic brain injury because of its prevalence and the associated high rates of cognitive impairment and work disability. As specified in its statement of task, the committee was tasked with providing findings and conclusions based on the evidence it gathered. At the committee’s first meeting, SSA confirmed that it wanted the committee to provide only findings and conclusions; recommendations were not to be included in this report. “Functional abilities relevant to work requirements” are defined by the U.S. Bureau of Labor Statistics’ (BLS’s) Occupational Requirements Survey and the Department of Labor for the Occupational Information System (see Chapter 2). Specific physical and mental functional abilities relevant to work requirements are discussed in Chapters 5 and 6, respectively. The committee also was asked to provide an overview of the functional assessment processes in at least three benefit programs similar to those of SSA that include assessment of disability or vocational capabilities, such as national and state government programs, private-sector programs, and programs based in other countries (see Chapter 8). BOX 1-1 Statement of Task An ad hoc committee will: 1. Identify and describe ways to collect information about an individual’s physical and mental (cognitive and noncognitive) functional abilities relevant to work requirements as defined by the U.S. Bureau of Labor Statistics’ Occupational Requirements Survey (ORS), such as sitting/standing/walking, lifting/carrying, vision, communication, decision making, and adaptability; 2. Discuss the types of information that support findings of limitations in functional abilities relevant to work requirements as defined by the U.S. Department of Labor for the Occupational Information System (OIS); 3. Provide findings and conclusions regarding the collection of information and assessment of functional abilities relevant to work requirements. As a guide for literature review, information and data gathering, public sessions, discussions, deliberations, and report development, including findings and conclusions, the committee shall consider the following specific topics: 1. Identify and describe ways to collect information about an individual’s physical and mental (cognitive and noncognitive) functional abilities relevant to work requirements as defined by the U.S. Bureau of Labor Statistics’ Occupational Requirements Survey PREPUBLICATION COPY: UNCORRECTED PROOFS

INTRODUCTION 1-3 (ORS), such as sitting/standing/walking, lifting/carrying, vision, communication, decision making, and adaptability. • Provide an overview of the functional assessment processes in at least three similar benefit programs that assess disability or vocational capabilities (national and state government programs, private-sector programs, and foreign programs as applicable); • Provide examples of forms, tools, guides, examinations, and other resources used by benefit programs that assess functional aspects of disability and vocational capabilities; • Identify activities of daily living that correlate with the physical and mental (cognitive and noncognitive) demands of work; and • Provide examples of how to collect information on activities of daily living that correlate with the physical and mental (cognitive and noncognitive) demands of work. 2. Discuss the types of information that support findings of limitations in functional abilities relevant to work requirements as defined by the U.S. Department of Labor for the Occupational Information System (OIS). • Describe the laboratory findings, signs, or symptoms of impairments that support findings of limitations in functional abilities relevant to work requirements; • Explain what information, including that which pertains to level of severity and duration, may be found in medical or other evidence to support a finding that a person is unable to sustain physical and mental work activities on an ongoing and independent basis in the context of functional limitations; • Identify any quantifiable limitations that may preclude certain levels of work (including sedentary) and give examples of the evidence to demonstrate such limitations. 3. Provide findings and conclusions regarding the collection of information and assessment of functional abilities relevant to work requirements. • Explain how limitations in functional abilities relevant to work requirements are more or less associated with particular mental or physical impairments; • Identify particular medical specialties and allied health fields that are likely to have the training and expertise to perform a functional assessments related to work requirements; • Identify tools that signify a functional assessment was performed, and how likely those reports are to be valid representations of a claimant’s functional limitations; • In the context of disability assessment, describe the spectrum of changes to functional abilities relevant to work requirements related to the progression of common disease processes in example impairments. These could include, but are not limited to back disorders, cardiac impairments, or depression. − Identify where along the spectrum an individual’s ability to perform functions relevant to work requirements is affected; − Describe whether the Social Security Administration (SSA) could expect improvement, no improvement, or progressive worsening in the example impairments; − Describe when significant changes in functional abilities relevant to work requirements may occur through the aging process for these examples, such as for adults with common age-related physical and mental impairments; − Describe the efficacy of medications and other treatments on an individual’s ability to perform functional abilities relevant to work requirements for these examples, and whether that treatment causes its own subset of medical and/or psychological problems that negatively affect an individual’s functioning and how SSA could request an appropriate assessment of functional changes; and − Describe how the examples are similar to or different from other impairments. • Discuss the advantages and disadvantages of generic functional assessment questionnaires that address a broad range of impairments and functional abilities relevant to work requirements, and targeted impairment-specific questionnaires, along with considerations in their use; and • Describe the best ways to determine the accuracy and validity of self-reported functional abilities, for example asking for input over the course of the claimant’s interactions with SSA and comparing for consistency. PREPUBLICATION COPY: UNCORRECTED PROOFS

1-4 FUNCTIONAL ASSESSMENT FOR ADULTS WITH DISABILITIES STUDY APPROACH The committee conducted an extensive review of the literature pertaining to functional assessment for adults with disabilities, as well as the literature specific to assessment of function and impairment trajectories in individuals with back disorders, cardiac impairments, depression, and traumatic brain injury. This review began with a search in online databases for U.S. and international English-language literature from 1980 through 2018. This search encompassed Medline (Ovid), PubMed, Web of Science, and Scopus, as well as websites including those of SSA, the U.S. Department of Labor, BLS, and the National Academies Press (see Appendix C). A second search of the same databases was conducted for 1998 through 2018 to capture additional peer-reviewed articles and reviews not captured in the initial search (see Appendix C). A third search targeted peer-reviewed articles and review articles pertaining to specific physical assessment instruments from 1980 through 2018 in Medline (Ovid), PubMed, Web of Science, and Scopus (see Appendix C). Committee members and project staff identified additional literature and information using traditional academic research methods and online searches throughout the course of the study. The committee used a variety of resources to supplement its review of the literature. Meeting in person five times, the committee held three public workshops to hear from invited experts in areas pertinent to its charge (see Appendix A). Speakers at the workshops included experts in functional assessment of physical and mental abilities relevant to work requirements and functional assessment tools and batteries, including the Patient-Reported Outcomes Measurement Information System (PROMIS®), the National Institutes of Health (NIH) Toolbox®, and the Work Disability-Functional Assessment Battery. The committee also heard from representatives of the Veterans Benefits Administration, workers’ compensation insurance (Chesapeake Employers’ Insurance Company, Maryland), and private disability insurance (Prudential and Sun Life Financial), who addressed the use of functional assessment in different benefit programs that assess disability or vocational capabilities, as well as representatives of several stakeholder organizations, including The Arc, Justice in Aging, Legal Services of New Jersey, and the National Organization of Social Security Claimants’ Representatives. In addition, the committee commissioned three papers: on the assessment of (1) hearing, (2) speech and language, and (3) vision in the context of work requirements. The committee’s work was further informed by previous reports of the National Academies. These included Measuring Functional Capacity and Work Requirements: Summary of a Workshop (IOM and NRC, 1999), Survey Measurement of Work Disability: Summary of a Workshop (IOM and NRC, 2000), The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs (IOM and NRC, 2002), Visual Impairments: Determining Eligibility for Social Security Benefits (NRC, 2002), Improving the Social Security Disability Decision Process (IOM, 2007a), The Future of Disability in America (IOM, 2007b), Cardiovascular Disability: Updating the Social Security Listings (IOM, 2010a), HIV and Disability: Updating the Social Security Listings (IOM, 2010b), A Database for a Changing Economy: Review of the Occupational Information Network (O*NET) (NRC, 2010), Psychological Testing in the Service of Disability Determination (IOM, 2015), Informing Social Security’s Process for Financial Capability Determination (NASEM, 2016), and The Promise of Assistive Technology to Enhance Activity and Work Participation (NASEM, 2017). PREPUBLICATION COPY: UNCORRECTED PROOFS

INTRODUCTION 1-5 REPORT ORGANIZATION Chapter 2 focuses on disability and function, providing further context for this report and introducing the committee’s conceptual framework. Chapter 3 describes SSA’s collection of the information on function and disability used in determining an individual’s eligibility for benefits, including the types, sources, and quality of functional information; the properties of assessment measures; and potential sources of bias in assessments. Topics covered in Chapter 4 include integrated assessments of work-related function, the relationship between activities of daily living and the physical and mental demands of work, and instruments designed to assess limitations in work activity due to health conditions. Chapters 5 and 6, respectively, review functional assessments of physical and mental abilities relevant to work requirements. Chapter 7 addresses selected impairments and associated limitations in functional abilities relevant to work. Chapter 8 provides a review of functional assessment processes in selected benefit programs that assess disability or vocational capabilities. Finally, Chapter 9 presents the committee’s overall conclusions. The report also includes four appendixes: Appendix A provides the agendas for the three public sessions held for this study; Appendix B is a glossary of terms used in the report; Appendix C gives further detail on the committee’s literature searches; and Appendix D contains biographical sketches of the committee members. REFERENCES IOM (Institute of Medicine). 2007a. Improving the Social Security disability decision process. Washington, DC: The National Academies Press. IOM. 2007b. The future of disability in America. Washington, DC: The National Academies Press. IOM. 2010a. Cardiovascular disability: Updating the Social Security listings. Washington, DC: The National Academies Press. IOM. 2010b. HIV and disability: Updating the Social Security listings. Washington, DC: The National Academies Press. IOM. 2015. Psychological testing in the service of disability determination. Washington, DC: The National Academies Press. IOM and NRC (National Research Council). 1999. Measuring functional capacity and work requirements: Summary of a workshop. Washington, DC: National Academy Press. IOM and NRC. 2000. Survey measurement of work disability: Summary of a workshop. Washington, DC: National Academy Press. IOM and NRC. 2002. The dynamics of disability: Measuring and monitoring disability for Social Security programs. Washington, DC: National Academy Press. NASEM (National Academies of Sciences, Engineering, and Medicine). 2016. Informing Social Security’s process for financial capability determination. Washington, DC: The National Academies Press. NASEM. 2017. The promise of assistive technology to enhance activity and work participation. Washington, DC: The National Academies Press. NRC (National Research Council). 2002. Visual impairments: Determining eligibility for Social Security benefits. Washington, DC: National Academy Press. NRC. 2010. A database for a changing economy: Review of the Occupational Information Network (O*NET). Washington, DC: The National Academies Press. SSA (U.S. Social Security Administration). 2018a. Annual statistical supplement, 2018—OASDI current- pay benefits: Summary (5.A). https://www.ssa.gov/policy/docs/statcomps/supplement/2018/5a.pdf (accessed April 3, 2019). PREPUBLICATION COPY: UNCORRECTED PROOFS

1-6 FUNCTIONAL ASSESSMENT FOR ADULTS WITH DISABILITIES SSA. 2018b. Annual statistical supplement, 2018—SSI summary (7.A). https://www.ssa.gov/policy/docs/statcomps/supplement/2018/7a.pdf (accessed April 3, 2019). PREPUBLICATION COPY: UNCORRECTED PROOFS

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The U.S. Social Security Administration (SSA) provides disability benefits through the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs. To receive SSDI or SSI disability benefits, an individual must meet the statutory definition of disability, which is “the inability to engage in any substantial gainful activity [SGA] 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.” SSA uses a five-step sequential process to determine whether an adult applicant meets this definition.

Functional Assessment for Adults with Disabilities examines ways to collect information about an individual’s physical and mental (cognitive and noncognitive) functional abilities relevant to work requirements. This report discusses the types of information that support findings of limitations in functional abilities relevant to work requirements, and provides findings and conclusions regarding the collection of information and assessment of functional abilities relevant to work requirements.

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