Appendix A
Descriptions of National Health and Health Care Surveys

NATIONAL HOUSEHOLD SURVEYS ON HEALTH-RELATED TOPICS

Behavioral Risk Factor Surveillance System (BRFSS)

Agency:

National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention

Main Purpose of Data Collection:

To collect state-level data on actual risk behaviors, as opposed to attitudes or feelings. The data are used to track and reduce health risk behaviors and associated illnesses.

Periodicity of Data Collection:

Monthly since 1984

Type of Survey:

• Cross-sectional

• Telephone interview

Sample Size:

1,200-7,000 interviewed yearly in each state; 100-700 interviewed monthly in each state.

Racial and Ethnic Data Collected:

Race: American Indian/Alaska Native; Asian or Pacific Islander; Black;



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Eliminating Health Disparities: Measurement and Data Needs Appendix A Descriptions of National Health and Health Care Surveys NATIONAL HOUSEHOLD SURVEYS ON HEALTH-RELATED TOPICS Behavioral Risk Factor Surveillance System (BRFSS) Agency: National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention Main Purpose of Data Collection: To collect state-level data on actual risk behaviors, as opposed to attitudes or feelings. The data are used to track and reduce health risk behaviors and associated illnesses. Periodicity of Data Collection: Monthly since 1984 Type of Survey: • Cross-sectional • Telephone interview Sample Size: 1,200-7,000 interviewed yearly in each state; 100-700 interviewed monthly in each state. Racial and Ethnic Data Collected: Race: American Indian/Alaska Native; Asian or Pacific Islander; Black;

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Eliminating Health Disparities: Measurement and Data Needs   White; Other; Refused Specification; Don’t Know/Not Sure   Ethnicity: Hispanic Origin; Not Hispanic Origin; Don’t Know; Refused Specification SEP Data Collected: Education, employment, income Language and Acculturation Data Collected: Not collected Consumer Assessment of Health Plans Survey (CAHPS) Agency: Center for Beneficiary Choices, Centers for Medicare and Medicaid Services Main Purpose of Data Collection: To collect information on consumers’ assessments of health plans in order to provide other consumers with easily accessible and understandable data to compare alternative health care providers. Periodicity of Data Collection: 1995, ongoing Type of Survey: • Cross-sectional • Kit of survey and report tools provided to health care providers. Information gathered is then reported to consumers. Sample Size: 2001:780,000 individuals completed the survey Racial and Ethnic Data Collected: Follows 1997 revised OMB standards SEP Data Collected: Highest grade level completed (these are core questions; other data may be collected specific to the type of services provided) Language and Acculturation Data Collected: The survey is offered in English and Spanish.

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Eliminating Health Disparities: Measurement and Data Needs Medical Expenditures Panel Survey (MEPS) Agency: Sponsoring organizations: Agency for Healthcare Research and Quality (AHRQ) and National Center for Health Statistics (NCHS) Main Purpose of Data Collection: To provide data about health care use and costs to improve economic projections. There are three main components—Household (HC), Insurance (IC), and Medical Provider (MPC); and one supplement—Nursing Home Component (NHC). Periodicity of Data Collection: Annual. HC and IC conducted from 1996-2000. NHC was a one-time survey in 1996. MPC is ongoing. Type of Survey: • Longitudinal: yearly sample followed for 2 years with five in-person interviews over the 2 years (approximately every 5-6 months). • HC is conducted as a personal interview in respondents’ households. Both the IC and MPC consist of telephone interviews and mailed survey materials. The NHC was a year-long survey that consisted of inperson interviews with nursing ho me sources and telephone interviews with next of kin. • MPC is not available for public use. Sample Size: HC: 1997:12,600 households, 34,000 individuals 1998:10,500 households, 23,000 individuals IC: Each year approximately 36,900 establishments and individuals (7,000 establishments from HC, 27,000 establishments from the Census Bureau’s list of private-sector businesses, 1,900 government offices from Census list of government employers,

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Eliminating Health Disparities: Measurement and Data Needs   and 1,000 individuals from IRS list of self-employed)   MPC: Approximately 22,600 providers (2,700 hospitals, 12,400 office-based physicians, 7,000 separate-billing hospital physicians, 500 home health providers) Racial and Ethnic Data Collected: HC: Race: American Indian, Aleut; Asian; Black; White; Other Ethnicity: Hispanic or Not Hispanic NHC: Race: American Indian or Alaska Native; Asian or Pacific Islander; Black; White; Other Ethnicity: Hispanic or Not Hispanic IC: Not collected MPC: Not collected SEP Data Collected: HC: education, employment, income/ poverty status, health care expenditures, and wealth (assets/debts) NHC: income and insurance coverage IC: Not collected MPC: Not collected Language and Acculturation Data Collected: HC: Language of interview IC, MPC, NHC: Not collected Medicare Current Beneficiary Survey (MCBS) Agency: Office of Research, Development, and Information (ORDI), Centers for Medicare and Medicaid Services Main Purpose of Data Collection: To collect data on Medicare beneficiaries’ care received, cost of care, and source of payment to aid Health Care Financing Administration’s oversight of Medicare and Medicaid programs.

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Eliminating Health Disparities: Measurement and Data Needs Periodicity of Data Collection: Annually since 1991 Type of Survey: • Longitudinal. A rotating panel is interviewed three times a year. Can be used as a time series. • In-person interview using CAPI Sample Size: Approximately 12,000 each year Racial and Ethnic Data Collected: Through 1997: Race: White; Black; American Indian or Alaska Native; Asian or Pacific Islander; Other Ethnicity: Hispanic or Not Hispanic Beginning in 1998: Race and Ethnicity: Follows 1997 revised OMB standards SEP Data Collected: Income, assets, family supports, quality of life, education Language and Acculturation Data Collected: Not collected National Health and Nutrition Examination Survey (NHANES) Agency: National Center for Health Statistics, Centers for Disease Control and Prevention NHANES I   Main Purpose of Data Collection: To collect and disseminate health and nutrition information and statistics. Also to measure and monitor the nutritional status of adults and children. Periodicity of Data Collection: 1971-1974 and 1974-1975 Type of Survey: • Cross-sectional • Interview and physical examination at mobile exam center (including vision and hearing, cardiovascular fitness and muscle strength, leg circu

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Eliminating Health Disparities: Measurement and Data Needs   lation and foot sensation tests; body fat, height, and weight measurements; dietary interview; body composition scan; dental check; and laboratory work) Sample Size:   1971-1974 1974-1975   Sample Size 28,043 4,288   Interviewed 27,753 4,220   Examined 30,749 3,059 Racial and Ethnic Data Collected: Race (1971-1974): White; Negro Origin or Descent (1971-1974): German; Irish; Italian; French; Polish; Russian; English; Spanish; Mexican; Chinese; Japanese; American Indian; and Another group not listed Race (1974-1975): White; Negro Origin or Descent (1974-1975): German; Irish; Italian; French; Polish; Russian; English; Welsh; Mexican; Mexican-American; Chicano; Mexicano; Puerto Rican; Cuban; Central or South American; Other Spanish; Negro; Black SEP Data Collected: Income, education, poverty status, employment (industry) Language and Acculturation Data Collected: Language spoken at home NHANES II   Main Purpose of Data Collection: To continue data collection from NHANES I on health and nutritional status of the population. Periodicity of Data Collection: 1976-1980 Type of Survey: See NHANES I Sample Size: Sample 27,801 Interviewed 25,286 Examined20,322

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Eliminating Health Disparities: Measurement and Data Needs Racial and Ethnic Data Collected: Race: White; Black; Other Ethnicity: Countries of Central or South America; Chicano; Cuban; Mexican; Mexicano; Mexican American; Puerto Rican; Other Spanish; Other European (such as German, Irish, English, or French); Black/ Negro/African American; American Indian or Alaska Native; Asian or Pacific Islander (such as Chinese, Japanese, Korean, Filipino, Samoan); Other SEP Data Collected: Poverty status, income, education, employment (industry, occupation) Language and Acculturation Data Collected: Language spoken at home NHANES III   Main Purpose of Data Collection: To continue data collection from NHANES I and II on health and nutritional status of the population. Periodicity of Data Collection: 1988-1994 Type of Survey: • Cross-sectional • Interview at respondent’s home (using pencil-and-paper interviewing [PAPI] during Phase I and computer-assisted personal interview [CAPI] during Phase II) and physical examination Sample Size: Phase I: 20,3000 (17,500 interviewed, 15,600 examined) Phase II: 19,400 (16,500 interviewed, 15,200 examined) Racial and Ethnic Data Collected: Race: Aleut/Eskimo/American Indian; Asian or Pacific Islander; Black; White; Other Ethnicity: Mexican/Mexican Ameri

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Eliminating Health Disparities: Measurement and Data Needs   can; Other Latin American or Other Spanish; Not of Hispanic Origin SEP Data Collected: Education, employment, income/ poverty status, health care expenditures Language and Acculturation Data Collected: Language spoken primarily at home, work, and school; language in which the interview was conducted (personal and examination); respondent, maternal, and paternal nativity 1999-Current NHANES   Main Purpose of Data Collection: To continue data collection from NHANES I, II, and III on health and nutritional status of the population. Periodicity of Data Collection: 1999-2003 (the latest release is 1999-2000 data) Type of Survey: Cross-sectional Sample Size: 1999-2000 data release: 9,965 persons Racial and Ethnic Data Collected: Follows 1997 revised OMB standards SEP Data Collected: Education, employment (industry, occupation, job duties), income Language and Acculturation Data Collected: Respondent, paternal, and maternal nativity; language spoken mainly at home, as a child, and with friends; languages respondent can read and speak; language in which the respondent thinks National Health Interview Survey (NHIS) Agency: National Center for Health Statistics, Centers for Disease Control and Prevention

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Eliminating Health Disparities: Measurement and Data Needs Main Purpose of Data Collection: To provide national-level general health statistics to monitor the health status of the U.S. population. Periodicity of Data Collection: Continuously since 1957 (new samples are drawn on a weekly basis). The content of the survey has been updated every 10-15 years. Type of survey: • Cross-sectional • Surveys conducted in respondents’ homes Sample Size: 2002 Survey: Family Core: 93,138 individuals Sample Adult Core: 31,044 individuals Sample Child Core: 12,524 individuals Total:136,706 Racial and Ethnic Data Collected: Race: For public use: 1997 revised OMB standards Additional racial categories not available for public use: Native Hawaiian; Guamanian; Samoan; Other Pacific Islander; Asian Indian; Chinese; Filipino; Japanese; Korean; Vietnamese Ethnicity: Hispanic, Central or South American; Other Latin American; Other Spanish; Hispanic/Latino/ Spanish type unknown; Not Hispanic/ Spanish origin SEP Data Collected: Employment, family income, education Language and Acculturation Data Collected: Place of birth, citizenship status National Immunization Survey (NIS) Agency: National Center for Health Statistics, Centers for Disease Control and Prevention

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Eliminating Health Disparities: Measurement and Data Needs Main Purpose of Data Collection: To provide vaccination data for public health partners. Periodicity of Data Collection: Quarterly, 1995-2001 Type of Survey: • Cross-sectional • Telephone survey; respondents’ immunization information verified by vaccination providers Sample Size: About 30,000 infants and children between the ages of 12 and 35 months Racial and Ethnic Data Collected: Race and ethnicity of mother and child collected: Race: White; Black; American Indian; Asian; Other; Don’t Know; Refused Specification Ethnicity: Not Spanish/Hispanic; Mexican; Mexican American; Chicano; Puerto Rican; Cuban; Other Spanish; Don’t Know; Refused Specification SEP Data Collected: Maternal education, poverty status, income Language and Acculturation Data Collected: Language of interview (English or Spanish) National Longitudinal Study of Adolescent Health (AddHEALTH) Agency: Demographic and Behavioral Sciences Branch, National Institute for Child Health and Human Development, National Institutes of Health Main Purpose of Data Collection: To provide a comprehensive view of the health and health behaviors of adolescents and the antecedents—personal, interpersonal, familial, and environmental—of these outcomes. Periodicity of Data Collection: September 1994-December 1995;

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Eliminating Health Disparities: Measurement and Data Needs   April-August 1996; August 2001-April 2002 Type of Survey: Longitudinal Sample Size: 21,000 adolescents were included in the original sample; 15,000 young adults completed the most recent interview. Racial and Ethnic Data Collected: First question about race/ethnicity asks respondents if they are of Hispanic or Latino origin. The next question offers the following choices: white; black or African American; American Indian or Native American; Asian or Pacific Islander; other. Respondents are allowed to choose as many races as they wish. SEP Data Collected: In the second wave of interviews, respondents were asked how much they typically work and earn during the school year and over the summer. Language and Acculturation Data Collected: Duration of domicile in the United States is collected. The respondent is asked what language is usually spoken in the home. Responses include English, Spanish, Other (please record language), and don’t know. If respondents say they are Hispanic or Asian, they are asked to choose from a list of countries to clarify their background. National Maternal and Infant Health Survey (NMIHS) Agency: National Center for Health Statistics, Centers for Disease Control and Prevention Main Purpose of Data Collection: To provide data to researchers on factors affecting adverse outcomes of pregnancy.

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Eliminating Health Disparities: Measurement and Data Needs Source of Data: Patient records Universe of Data Collection: All persons in the United States with trichinosis Racial and Ethnic Data Collected: American Indian or Alaska Native; Asian or Pacific Islander; Black; White; Unknown. Ethnic categories are: Hispanic; Non-Hispanic; Unknown. SEP Data Collected: Not collected Language and Acculturation Data Collected: Not collected Surveillance for Tuberculosis Infection in Health Care Workers (StaffTRAK-TB) Agency: National Center for HIV, STD, and TB Prevention Purpose of Collection: To test health care workers for TB infection routinely as per CDC infection control guidelines. Source of Data: Direct interview/self-report Universe of Data Collection: All health care workers from participating hospitals Racial and Ethnic Data Collected: Asian, Black, Hispanic, American Indian/Alaska Native, White, Other races SEP Data Collected: Occupation Language and Acculturation Data Collected: Country of birth Tetanus Agency: National Immunization Program Purpose of Collection: To provide data describing each tetanus case with respect to the wound, type of wound, and where it occurred.

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Eliminating Health Disparities: Measurement and Data Needs Source of Data: Patient records Universe of Data Collection: All persons in the United States with tetanus Racial and Ethnic Data Collected: Uses OMB standards SEP Data Collected: Occupation Language and Acculturation Data Collected: Not collected Traumatic Brain Injury Surveillance System (TBISS) Agency: National Center for Injury Prevention and Control Purpose of Collection: To understand the magnitude and characteristics of hospitalized and fatal traumatic brain injuries in the United States; to collect program wide information that can be used to help design targeted prevention programs addressing specific causes of traumatic brain injuries and populations at higher risk; to improve injured persons’ access to health care; and to improve other services they need after injury. Source of Data: Patient records Universe of Data Collection: All persons in the United States who suffer a traumatic brain injury Racial and Ethnic Data Collected: American Indian/Alaska Native; Asian or Pacific Islander; Black; White; Other. Categories of ethnicity are Hispanic and Not of Hispanic Origin. Since information on nonfatal cases is obtained from hospital discharge data systems, data on race/ethnicity are not available from states. SEP Data Collected: Not collected Language and Acculturation Data Collected: Not collected

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Eliminating Health Disparities: Measurement and Data Needs Tuberculosis Information Management System (TIMS) Agency: National Center for HIV, STD, and TB Prevention Purpose of Collection: To assist health departments and other facilities to manage TB patients, to conduct TB surveillance activities, and to manage TB programs overall. Source of Data: Direct interview and patient records Universe of Data Collection: All persons with TB who visit private doctors or nurses, hospitals, and public health clinics, and data from public health laboratories and state/ local health departments Racial and Ethnic Data Collected: Uses OMB standards SEP Data Collected: Not collected Language and Acculturation Data Collected: Not collected Unexplained Deaths and Serious Illnesses Surveillance Agency: National Center for Infectious Diseases Purpose of Collection: To identify and collect clinical specimens from people who have suffered unexplained deaths or serious illnesses. Source of Data: Medical records Universe of Data Collection: All previously healthy persons in the United States, aged 1-49 years, who have died for no obvious reason or who have experienced an unexplained serious illness Racial and Ethnic Data Collected: Available, but categories are not specified SEP Data Collected: Occupation Language and Acculturation Data Collected: Not collected

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Eliminating Health Disparities: Measurement and Data Needs Universal Data Collection and Serum Specimen Collection System (UDC) Agency: National Center for Infectious Diseases Purpose of Collection: To collect prospective clinical data on persons with hemophilia and other bleeding disorders in the United States who receive at least some of their care from federally sponsored hemophilia treatment centers. Source of Data: Medical records Universe of Data Collection: All persons in the United States with hemophilia and other bleeding disorders who receive at least some of their care from federally sponsored hemophilia treatment centers Racial and Ethnic Data Collected: Available, but no standardized categories are used SEP Data Collected: Education Language and Acculturation Data Collected: Not collected United States Influenza Sentinel Physician Surveillance Network Agency: National Center for Infectious Diseases Purpose of Collection: To identify how many people in the United States have influenza or an influenza-like illness. Source of Data: Physician survey Universe of Data Collection: All persons who visit a doctor in the United States and exhibit symptoms of influenza Racial and Ethnic Data Collected: Not collected SEP Data Collected: Not collected Language and Acculturation Data Collected: Not collected

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Eliminating Health Disparities: Measurement and Data Needs Vaccine Adverse Event Reporting System (VAERS) Agency: National Immunization Program Purpose of Collection: To compile and monitor national estimates of adverse events by vaccine antigen and vaccine lot. Source of Data: Patient records Universe of Data Collection: All persons in the United States who experience an adverse event due to vaccination Racial and Ethnic Data Collected: Not collected SEP Data Collected: Not collected Language and Acculturation Data Collected: Not collected Viral Hepatitis Surveillance Program (VHSP) Agency: National Center for Infectious Diseases Purpose of Collection: To compile clinical, serologic, and epidemiologic data on cases of hepatitis A, B, and C and to monitor the effectiveness of prevention and control programs for these diseases. Source of Data: Patient records Universe of Data Collection: All persons in the United States who have hepatitis A, B, or C Racial and Ethnic Data Collected: American Indian or Alaska Native; Asian or Pacific Islander; Black; White; Unknown. Ethnic categories are: Hispanic; non-Hispanic; Unknown. SEP Data Collected: Not collected Language and Acculturation Data Collected: Place of birth, either United States. or Other (specify), and place of birth of the person’s mother

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Eliminating Health Disparities: Measurement and Data Needs Waterborne Diseases Outbreak Surveillance System (WBDOSS) Agency: National Center for Infectious Diseases Purpose of Collection: To collect and summarize data on waterborne disease outbreaks and identify trends in outbreaks summarized by the type of contaminant and by the type of water that was contaminated. Source of Data: Survey and patient records Universe of Data Collection: All persons in the United States infected with a waterborne disease Racial and Ethnic Data Collected: Not collected SEP Data Collected: Not collected Language and Acculturation Data Collected: Not collected HUMAN SERVICE PROGRAMS IN DHHS Child Care and Development Block Grant Agency: Administration for Children and Families Purpose: To make grants to states and tribes to assist low-income families with child care and to: (1) allow each state maximum flexibility in developing child care programs and policies that best suit the needs of children and parents within state; (2) promote parental choice to empower working parents to make their own decisions on the child care that best suits their family’s needs; (3) encourage states to provide consumer education information to help parents make informed choices about child care; (4) assist states to provide child care to parents trying to achieve independence from

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Eliminating Health Disparities: Measurement and Data Needs   public assistance; and (5) assist states in implementing the health, safety, licensing, and registration standards established in state regulations. Population Covered: Children under the age of 13 (or up to age 19 if physically or mentally incapable of self-care or under court supervision) who reside with a family whose income does not exceed 85 percent of the state median income for a family of the same size, and who reside with a parent (or parents) who is working or attending job training or an educational program; or who are in need of, or are receiving protective services. Racial and Ethnic Data Collected: Uses OMB standards SEP Data Collected: Total monthly family income and sources of family income are collected. Language and Acculturation Data Collected: Not collected Child Support Enforcement Program (CSE) Agency: Administration for Children and Families Purpose: This program is a federal/state/local partnership that works to locate noncustodial parents, establish paternity when necessary, establish orders for support, and collect child support payments for families. Population Covered: Services are available to a parent with custody of a child who has a parent living outside of the home. Services are available automatically for families receiving assistance under the Temporary Assistance for Needy Families (TANF) program. Current

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Eliminating Health Disparities: Measurement and Data Needs   child support collected reimburses the state and federal governments for TANF payments made to the family. Those not receiving public assistance can apply for child support services. Child support payments that are collected on behalf of non-TANF families are sent to the family. Racial and Ethnic Data Collected: Not collected SEP Data Collected: Not collected Language and Acculturation Data Collected: Not collected Adoption and Foster Care Analysis and Reporting System Agency: Administration for Children and Families Purpose: Collects information on all children in foster care for whom the state child welfare agency has responsibility as well as children who are adopted under the auspices of the state’s public child welfare agency. Population Covered: All children in foster care Racial and Ethnic Data Collected: Uses OMB standards (can choose more than one race) SEP Data Collected: Not collected Language and Acculturation Data Collected: Not collected Head Start Agency: Head Start Bureau, Administration for Children and Families Purpose: To increase the school readiness of young children in low-income families.

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Eliminating Health Disparities: Measurement and Data Needs Population Covered: Children from low-income families, from birth to age 5 Racial and Ethnic Data Collected: Uses OMB standards SEP Data Collected: Household income Language and Acculturation Data: Language spoken at home and a rating of English proficiency are gathered. Maternal and Child Health Block Grant (MCH) Agency: Maternal and Child Health Bureau, Health Resources and Services Administration Purpose: To promote and improve the health of all United States mothers and children by supporting states’ efforts to extend and improve health and welfare services for mothers and children. Population Covered: All mothers and children in the United States Racial and Ethnic Data Collected: Uses OMB standards (can choose more than one race) SEP Data Collected: Income Language and Acculturation Data Collected: Not collected The National Child Abuse and Neglect Data System Agency: Administration for Children and Families Purpose: To provide state and national data on child abuse and neglect for program planning, program review, and policy development. Population Covered: All children in the United States Racial and Ethnic Data Collected: Uses OMB standards

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Eliminating Health Disparities: Measurement and Data Needs SEP Data Collected: Not collected Language and Acculturation Data Collected: Not collected National Survey of Child and Adolescent Well-Being Agency: Administration for Children and Families Purpose: To examine child and family well-being outcomes in detail and seek to relate those outcomes to their experience with the child welfare system and to family characteristics, community environment, and other factors. The study describes the child welfare system and the experiences of children and families who come in contact with the system. Population Covered: Children who are at risk of abuse or neglect or are in the child welfare system Racial and Ethnic Data Collected: Uses OMB standards SEP Data Collected: Information about financial resources available to the child’s family is collected. Language and Acculturation Data Collected: Not collected Social Services Block Grant (SSBG) Agency: Administration for Children and Families Purpose: To fund states for the provision of social services directed toward achieving economic self-support or self-sufficiency, preventing or remedying neglect, abuse, or the exploitation of children and adults, preventing or reducing inappropriate institutional

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Eliminating Health Disparities: Measurement and Data Needs   ization, and securing referral for institutional care, where appropriate. Population Covered: All people in the United States Racial and Ethnic Data Collected: Not collected SEP Data Collected: Not collected Language and Acculturation Data Collected: Not collected Temporary Assistance to Needy Families (TANF) Agency: Office of Family Assistance, Administration for Children and Families Purpose: To provide assistance and work opportunities to needy families by granting states with federal funds and wide flexibility to develop and implement their own welfare programs. Population Covered: Low-income people in the United States Racial and Ethnic Data Collected: Uses OMB standards SEP Data Collected: Collects employment, income, and cash resources information Language and Acculturation Data Collected: Not collected Uses OMB standards: American Indian and Alaska Native; Asian; Black or African American; Native Hawaiian and Other Pacific Islander; White. Respondents shall be allowed the option of selecting one or more racial categories. There are two categories for data on ethnicity: Hispanic or Latino and Not Hispanic or Latino.