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— require the collection of 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 accordance with reports received by the Commissioner or the Secretary of the Treasury— using, at a minimum, the standards for data collection on race, ethnicity, primary language, and disability status developed under section 3101 of the Public Health Service Act; where practicable, collecting data for additional population groups if such groups can be aggregated into the race and ethnicity categories outlined by the standards developed under section 3101 of the Public Health Service Act; and additionally referring, where practicable, to the standards developed by the Institute of Medicine in Race, Ethnicity, and Language Data:
Standardization for Health Care Quality Improvement (released August 31, 2009); with respect to the collection of the data described in paragraph
(1)for applicants who are under 18 years of age or otherwise legally incapacitated, 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; require that such data be uniformly analyzed and reported at least annually to the Commissioner of Social Security; be responsible for storing the data reported under paragraph (3); ensure transmission to the Centers for Medicare & Medicaid Services and other Federal health agencies; provide such data to the Secretary on at least an annual basis; and ensure that the provision of assistance 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)are 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 ( Public Law 104–191 ; 110 Stat. 2033) 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 health entity to comply with the requirements of this section. There are authorized to be appropriated to carry out this section such sums as may be necessary for each of fiscal years 2015 through 2020. .
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- Pub. L. 104-191
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Sec. 103
Collection of race and ethnicity data by the Social Security Administration
Pub. L.Pub. L. 104-191
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