Sec. 103. Collection of race and ethnicity data by the Social Security Administration
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Part A of title XI of the Social Security Act ( 42 U.S.C. 1301 et seq.) is amended by adding at the end the following: The Commissioner of Social Security, in consultation with the Administrator of the Centers for Medicare & Medicaid Services, shall collect data on the race, ethnicity, primary language, and disability status of all applicants for Social Security account numbers or benefits under title II or part A of title XVIII and all individuals with respect to whom the Commissioner maintains records of wages and self-employment income.
In collecting data under paragraph (1), the Commissioner of Social Security shall use standards for data collection on race, ethnicity, primary language, and disability status developed under section 3101 of the Public Health Service Act and, where practicable, the standards developed by the Institute of Medicine in Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement (released August 31, 2009). Where practicable, the information collected by the Commissioner of Social Security under paragraph
(1)shall include data for additional population groups if such groups can be aggregated into the race and ethnicity categories outlined by the data collection standards described in paragraph (2). With respect to the collection of the data described in paragraph
(1)of applicants who are under 18 years of age or otherwise legally incapacitated, the Commissioner of Social Security shall require that— such data be collected from the parent or legal guardian of such an applicant; and the primary language of the parent or legal guardian of such an applicant or recipient be used in collecting the data. With respect to data collected under paragraph (1), the Commissioner of Social Security shall— require that such data be uniformly analyzed and that such analysis be reported at least annually to the Commissioner; be responsible for storing the data reported under subparagraph (A); ensure transmission to the Centers for Medicare & Medicaid Services and other agencies within the Department of Health and Human Services, as determined appropriate by the Secretary; provide such data to the Secretary on at least an annual basis; and ensure that the provision of assistance or benefits to an applicant is not denied or otherwise adversely affected because of the failure of the applicant to provide race, ethnicity, primary language, and disability status data. The Commissioner of Social Security shall ensure (through the promulgation of regulations or otherwise) that all data collected pursuant to subsection
(a)is protected— under the same privacy protections as the Secretary applies to health data under the regulations promulgated under section 264(c) of the Health Insurance Portability and Accountability Act of 1996 (relating to the privacy of individually identifiable health information and other protections); and from all inappropriate internal use by any entity that collects, stores, or receives the data, including use of such data in determinations of eligibility (or continued eligibility) in health plans, and from other inappropriate uses, as defined by the Secretary. Nothing in this section shall be construed to permit the use of information collected under this section in a manner that would adversely affect any individual providing any such information. The Secretary may, either directly or by grant or contract, provide technical assistance to enable any entity to comply with the requirements of this section or with regulations implementing this section. There are authorized to be appropriated to carry out this section such sums as may be necessary for each of fiscal years 2019 through 2024. .
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Sec. 103
Collection of race and ethnicity data by the Social Security Administration
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