Title V Information System Glossary
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Adequate prenatal care - Prenatal care where the observed to expected prenatal visits is greater than or equal to 80% (the Kotelchuck Index).
Administration of Title V Funds - The amount of funds the State uses for the management of the Title V allocation. It is limited by statute to 10 percent of the Federal Title V allotment.
Assessment - (see “Needs Assessment”).
Capacity - Program capacity includes delivery systems, workforce, policies, and support systems (e.g., training, research, technical assistance, and information systems) and other infrastructure needed to maintain service delivery and policy making activities. Program capacity results measure the strength of the human and material resources necessary to meet public health obligations. As program capacity sets the stage for other activities, program capacity results are closely related to the results for process, health outcome, and risk factors. Program capacity results should answer the question, “What does the State need to achieve the results we want?”
Capacity Objectives - Objectives that describe an improvement in the ability of the program to deliver services or affect the delivery of services.
Care Coordination Services for Children With Special Health Care Needs (CSHCN, see definition below) - those services that promote the effective and efficient organization and utilization of resources to assure access to necessary comprehensive services for children with special health care needs and their families. [Title V Sec. 501(b)(3)]
Carryover (as used in Forms 2 and 3) - The unobligated balance from the previous years MCH Block Grant Federal Allocation.
Case Management Services - For pregnant women - those services that assure access to quality prenatal, delivery and postpartum care. For infants up to age one - those services that assure access to quality preventive and primary care services. (Title V Sec. 501(b)(4)
Children - A child from 1st birthday through the 21st year, who is not otherwise included in any other class of individuals.
Children With Special Health Care Needs (CSHCN) - (For budgetary purposes) Infants or children from birth through the 21st year with special health care needs who the State has elected to provide with services funded through Title V. CSHCN are children who have health problems requiring more than routine and basic care including children with or at risk of disabilities, chronic illnesses and conditions and health-related education and behavioral problems. (For planning and systems development) - Those children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.
Children With Special Health Care Needs (CSHCN) - Constructs of a Service System
- State Program Collaboration with Other State Agencies and Private Organizations
States establish and maintain ongoing interagency collaborative processes for the assessment of needs with respect to the development of community-based systems of services for CSHCN. State programs collaborate with other agencies and organizations in the formulation of coordinated policies, standards, data collection and analysis, financing of services, and program monitoring to assure comprehensive, coordinated services for CSHCN and their families.
State Support for Communities
State programs emphasize the development of community-based programs by establishing and maintaining a process for facilitating community systems building through mechanisms such as technical assistance and consultation, education and training, common data protocols, and financial resources for communities engaged in systems development to assure that the unique needs of CSHCN are met.
Coordination of Health Components of Community-Based Systems
A mechanism exists in communities across the State for coordination of health services with one another. This includes coordination among providers of primary care, habilitative and rehabilitative services, other specialty medical treatment services, mental health services, and home health care.
Coordination of Health Services with Other Services at the Community Level
A mechanism exists in communities across the State for coordination and service integration among programs serving CSHCN, including early intervention and special education, social services, and family support services.
Classes of Individuals - authorized persons to be served with Title V funds. See individual definitions under “Pregnant Women,” “Infants,” “Children with Special Health Care Needs,” “Children,” and “Others.”
Community - a group of individuals living as a smaller social unit within the confines of a larger one due to common geographic boundaries, cultural identity, a common work environment, common interests, etc.
Community-based Care - services provided within the context of a defined community.
Community-based Service System - an organized network of services that are grounded in a plan developed by a community and that is based upon needs assessments.
Coordination (see Care Coordination Services).
Culturally Sensitive - the recognition and understanding that different cultures may have different concepts and practices with regard to health care; the respect of those differences and the development of approaches to health care with those differences in mind.
Culturally Competence - a set of values, behaviors, attitudes, and practices within a system, organization, program, or among individuals and which enables them to work effectively cross culturally. Further, it refers to the ability to honor and respect the beliefs, language, inter-personal styles and behaviors of individuals and families receiving services, as well as staff who are providing such services. At a systems, organizational, or program level, cultural competence requires a comprehensive and coordinated plan that includes interventions at all the levels from policy-making to the individual, and is a dynamic, ongoing, process that requires a long-term commitment. A component of cultural competence is linguistic competence, the capacity of an organization and its personnel to communicate effectively, and convey information in a manner that is easily understood by diverse audiences including persons of limited English proficiency, those who are not literate or have low literacy skills, and individuals with disabilities.
Regarding the principles of cultural competence, an organization should value diversity in families, staff, providers and communities; have the capacity for cultural self-assessment; be conscious of the dynamics inherent when cultures interact, e.g. families and providers; institutionalize cultural knowledge; and develop adaptations to service delivery and partnership building reflecting an understanding of cultural diversity. An individual should examine one’s own attitude and values; acquire the values, knowledge, and skills for working in cross cultural situations; and remember that every one has a culture.
Sources: Maternal and Child Health Bureau (MCHB), Guidance and Performance Measures for Discretionary Grants, Health Resources and Services Administration, U.S. Department of Health and Human Services, Denboba and Goode, 1999 and 2004.
Cross, Bazron, Dennis and Isaacs, Towards a Culturally Competent System of Care, 1989.
Goode and Jones, Definition of Linguistic Competence, National Center for Cultural Competence, Revised 2004.
Denboba, “Federal Viewpoint,” Special Additions Newsletter for Children with Special Health Care Needs, Spring/Summer 2005.
Data Systems Development - Development of data management systems (electronic or other) or linking of existing databases to support States’ ability to collect, tabulate, analyze, and report data accurately. (also see Systems Development)
Deliveries - women who received a medical care procedure (were provided prenatal, delivery or postpartum care) associated with the delivery or expulsion of a live birth or fetal death.
Direct Services/Direct Health Care Services - those services generally delivered one-on-one between a health professional and a patient in an office, clinic or emergency room which may include primary care physicians, registered dietitians, public health or visiting nurses, nurses certified for obstetric and pediatric primary care, medical social workers, nutritionists, dentists, sub-specialty physicians who serve children with special health care needs, audiologists, occupational therapists, physical therapists, speech and language therapists, specialty registered dietitians. Basic services include what most consider ordinary medical care, inpatient and outpatient medical services, allied health services, drugs, laboratory testing, x-ray services, dental care, and pharmaceutical products and services. State Title V programs support - by directly operating programs or by funding local providers - services such as prenatal care, child health including immunizations and treatment or referrals, school health and family planning. For CSHCN, these services include specialty and sub-specialty care for those with HIV/AIDS, hemophilia, birth defects, chronic illness, and other conditions requiring sophisticated technology, access to highly trained specialists, or an array of services not generally available in most communities.
Early Neonatal - Infants less than or equal to 6 days of age.
Enabling Services - Services that allow or provide for access to and the derivation of benefits from, the array of basic health care services and include such things as transportation, translation services, outreach, respite care, health education, family support services, purchase of health insurance, case management, coordination of with Medicaid, WIC and education. These services are especially required for the low income, disadvantaged, geographically or culturally isolated, and those with special and complicated health needs. For many of these individuals, the enabling services are essential - for without them access is not possible. Enabling services most commonly provided by agencies for CSHCN include transportation, care coordination, translation services, home visiting, and family outreach. Family support activities include parent support groups, family training workshops, advocacy, nutrition and social work.
EPSDT - Early and Periodic Screening, Diagnosis and Treatment - a program for medical assistance recipients under the age of 21, including those who are parents. The program has a Medical Protocol and Periodicity Schedule for well-child screening that provides for regular health check-ups, vision/hearing/dental screenings, immunizations and treatment for health problems.
Family-centered Care - Approach that assures the health and well-being of children and their families through a respectful family-professional partnership. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. Family-Centered Care is the standard of practice which results in high quality services.
Family/Professional Partnerships - The foundation of family-centered care is the partnership between families and professionals. The following key principles to this partnership are:
Based on this partnership, family-centered care:
- Families and professionals work together in the best interest of the child and the family. As the child grows, s/he assumes a partnership role;
- Everyone respects the skills and expertise brought to the relationship;
- Trust is acknowledged as fundamental;
- Communication and information sharing are open and objective;
- Participants make decisions together; and
- There is a willingness to negotiate.
Sources: National Center for Family-Centered Care. Family-Centered Care for Children with Special Health Care Needs. (1989). Bethesda, MD: Association for the Care of Children’s Health.
- Acknowledges the family as the constant in a child’s life;
- Builds on family strengths;
- Supports the child in learning about and participating in his/her care and decision-making;
- Honors cultural diversity and family traditions;
- Recognizes the importance of community-based services;
- Promotes an individual and developmental approach;
- Encourages family-to-family and peer support;
- Supports youth as they transition to adulthood;
- Develops policies, practices, and systems that are family-friendly and family-centered in all settings; and
- Celebrates successes.
Bishop, Woll and Arango (1993). Family/Professional Collaboration for Children with Special Health Care Needs and their Families. Burlington, VT: University of Vermont, Department of Social Work.
Family-Centered Care Projects 1 and 2 (2002-2004). Bishop, Woll, Arango. Algodones, NM; Algodones Associates.
Federal (Allocation) - (as it applies specifically to the Application Face Sheet [SF 424] and Forms 2 and 3) The funding provided to the States under the Federal Title V Block Grant in any given year.
Government Performance and Results Act (GPRA) - Federal legislation enacted in 1993 that requires Federal agencies to develop strategic plans, prepare annual plans setting performance goals, and report annually on actual performance.
Health Care System - the entirety of the agencies, services, and providers involved or potentially involved in the health care of community members and the interactions among those agencies, services and providers.
Infants - Children less than one year of age not included in any other class of individuals.
Infrastructure Building Services - The services that are the base of the MCH pyramid of health services and form its foundation are activities directed at improving and maintaining the health status of all women and children by providing support for development and maintenance of comprehensive health services systems including development and maintenance of health services standards/guidelines, training, data and planning systems. Examples include needs assessment, evaluation, planning, policy development, coordination, quality assurance, standards development, monitoring, training, applied research, information systems and systems of care. In the development of systems of care it should be assured that the systems are family centered, community based and culturally competent.
Jurisdictions - As used in the Maternal and Child Health block grant program: the District of Columbia, the Commonwealth of Puerto Rico, the Virgin Islands, Guam, American Samoa, the Commonwealth of the Northern Mariana Islands, the Republic of the Marshal Islands, the Federated States of Micronesia and the Republic of Palau.
Kotelchuck Index - An indicator of the adequacy of prenatal care. See Adequate Prenatal Care.
Local Funding (as used in Forms 2 and 3) - Those monies deriving from local jurisdictions within the State that are used for MCH program activities.
Low Income - an individual or family with an income determined to be below the income official poverty line defined by the Office of Management and Budget and revised annually in accordance with section 673(2) of the Omnibus Budget Reconciliation Act of 1981. [Title V, Sec. 501 (b)(2)]
MCH Pyramid of Health Services - (see “Types of Services”).
Measures - (see “Performance Measures”).
Morbidity - A general term for any health condition that encompasses diseases, injuries, and impairments in a population or group.
Mortality - A general term for the incidence of deaths in a population or group. The number of deaths by age, sex, race/ethnicity, geographic area, and cause of death.
Mortality Rate - The number of deaths occurring in a given population at risk during a specific time period. The number of deaths in a demographic group (numerator) divided by the population (denominator) and expressed as per 1000 live births (infant mortality rate only) or per 100,000 population, generally at mid-year.
Needs Assessment - a study undertaken to determine the service requirements within a jurisdiction. For maternal and child health purposes, the study is to aimed at determining:1) What is essential in terms of the provision of health services; 2) What is available; and, 3) What is missing.
Neonatal - Infants less than 28 days of age.
Objectives - The yardsticks by which an agency can measure its efforts to accomplish a goal. (See also “Performance Objectives”)
Other Federal Funds (Forms 2 and 3) - Federal funds other than the Title V Block Grant that are under the control of the person responsible for administration of the Title V program. These may include, but are not limited to: WIC, EMSC, Healthy Start, SPRANS, HIV/AIDs monies, CISS funds, MCH targeted funds from CDC, and MCH Education funds.
Others (as in Forms 4, 7, and 10) - Women of childbearing age, over age 21, and any others defined by the State and not otherwise included in any of the other listed classes of individuals.
Outcome Objectives - Objectives that describe the eventual result sought, the target date, the target population, and the desired level of achievement for the result. Outcome objectives are related to health outcome and are usually expressed in terms of morbidity and mortality.
Outcome Measure - The ultimate focus and desired result of any set of public health program activities and interventions is an improved health outcome. Morbidity and mortality statistics are indicators of achievement of health outcome. Health outcomes results are usually longer term and tied to the ultimate program goal. Outcome measures should answer the question, “Why does the State do our program?”
Performance Indicator - The statistical or quantitative value that expresses the result of a performance objective.
Performance Measure - a narrative statement that describes a specific maternal and child health need, or requirement, that, when successfully addressed, will lead to, or will assist in leading to, a specific health outcome within a community or jurisdiction and generally within a specified time frame. (Example: “The rate of women in [State] who receive early prenatal care in 19__.” This performance measure will assist in leading to [the health outcome measure of] reducing the rate of infant mortality in the State).
Performance Measurement - The collection of data on, recording of, or tabulation of results or achievements, usually for comparing with a benchmark.
Performance Objectives - A statement of intention with which actual achievement and results can be measured and compared. Performance objective statements clearly describe what is to be achieved, when it is to be achieved, the extent of the achievement, and target populations.
Perinatal - Period from gestation of 28 weeks or more to 7 days or less after birth.
Population Based Services - Preventive interventions and personal health services, developed and available for the entire MCH population of the State rather than for individuals in a one-on-one situation. Disease prevention, health promotion, and statewide outreach are major components. Common among these services are newborn screening, lead screening, immunization, Sudden Infant Death Syndrome counseling, oral health, injury prevention, nutrition and outreach/public education. These services are generally available whether the mother or child receives care in the private or public system, in a rural clinic or an HMO, and whether insured or not.
Post-neonatal - of, relating to, or affecting the infant and especially the human infant usually from the end of the first month to a year after birth.
PRAMS - Pregnancy Risk Assessment Monitoring System - a surveillance project of the Centers for Disease Control and Prevention (CDC) and State health departments to collect State- specific, population-based data on maternal attitudes and experiences prior to, during, and immediately following pregnancy.
Pregnant Woman - A female from the time that she conceives to 60 days after birth, delivery, or expulsion of fetus.
Prenatal - Occurring or existing before birth, referring to both the care of the woman during pregnancy and the growth and development of the fetus.
Preventive Services - activities aimed at reducing the incidence of health problems or disease prevalence in the community, or the personal risk factors for such diseases or conditions.
Primary Care - the provision of comprehensive personal health services that include health maintenance and preventive services, initial assessment of health problems, treatment of uncomplicated and diagnosed chronic health problems, and the overall management of an individual’s or family’s health care services.
Process - Process results are indicators of activities, methods, and interventions that support the achievement of outcomes (e.g., improved health status or reduction in risk factors). A focus on process results can lead to an understanding of how practices and procedures can be improved to reach successful outcomes. Process results are a mechanism for review and accountability, and as such, tend to be shorter term than results focused on health outcomes or risk factors. The utility of process results often depends on the strength of the relationship between the process and the outcome. Process results should answer the question, “Why should this process be undertaken and measured (i.e., what is its relationship to achievement of a health outcome or risk factor result)?”
Process Objectives - The objectives for activities and interventions that drive the achievement of higher-level objectives.
Program Income (as used in the Application Face Sheet [SF 424] and Forms 2 and 3) - Funds collected by State MCH agencies from sources generated by the State’s MCH program to include insurance payments, Medicaid reimbursements, HMO payments, etc.
Risk Factor Objectives - Objectives that describe an improvement in risk factors (usually behavioral or physiological) that cause morbidity and mortality.
Risk Factors - Public health activities and programs that focus on reduction of scientifically established direct causes of, and contributors to, morbidity and mortality (i.e., risk factors) are essential steps toward achieving health outcomes. Changes in behavior or physiological conditions are the indicators of achievement of risk factor results. Results focused on risk factors tend to be intermediate term. Risk factor results should answer the question, “Why should the State address this risk factor (i.e., what health outcome will this result support)?”
State - as used in this guidance, includes the 50 States and the 9 jurisdictions. (See also, Jurisdictions)
State Funds (as used in Forms 2 and 3) - The State’s required matching funds (including overmatch) in any given year.
Sudden Unexpected Infant Deaths (SUID) - Sudden Unexpected Infant Deaths are defined as deaths in infants less than 1 year of age that occur suddenly and unexpectedly, and whose cause of death are not immediately obvious prior to investigation.
Sudden Infant Death Syndrome (SIDS) is defined as the sudden death of an infant less than 1 year of age that cannot be explained after a thorough investigation is conducted, including a complete autopsy, examination of the death scene, and review of the clinical history.
Systems Development - activities involving the creation or enhancement of organizational infrastructures at the community level for the delivery of health services and other needed ancillary services to individuals in the community by improving the service capacity of health care service providers.
Targets - An aspired outcome that is explicitly stated, e.g. achieve 90% of timeliness of reporting, 100% completeness of reporting, etc. In this guidance, “Targets” is often used interchangeably with “Objectives.”
Technical Assistance (TA) - the process of providing recipients with expert assistance of specific health related or administrative services that include; systems review planning, policy options analysis, coordination coalition building/training, data system development, needs assessment, performance indicators, health care reform wrap around services, CSHCN program development/evaluation, public health managed care quality standards development, public and private interagency integration and, identification of core public health issues.
Title V, number of deliveries to pregnant women served under - Unduplicated number of deliveries to pregnant women who were provided prenatal, delivery, or post-partum services through the Title V program during the reporting period.
Title V, number of infants enrolled under - The unduplicated count of infants provided a direct service by the State’s Title V program during the reporting period.
Title XIX, number of infants entitled to - The unduplicated count of infants who were eligible for the State’s Title XIX (Medicaid) program at any time during the reporting period.
Title XIX, number of pregnant women entitled to - The number of pregnant women who delivered during the reporting period who were eligible for the State’s Title XIX (Medicaid) program.
Title XXI - Children's Health Insurance Program (CHIP) financed via CMS through FY 2013. The purpose of this title is to provide funds to States to enable them to initiate and expand the provision of child health assistance to uninsured, low-income children in an effective and efficient manner that is coordinated with other sources of health benefits coverage for children. Sec. 2101. [42 U.S.C. 1397aa]
Total MCH Funding - All the MCH funds administered by a State MCH program which is made up of the sum of the Federal Title V Block grant allocation, the Applicant’s funds (carryover from the previous year’s MCH Block Grant allocation - the unobligated balance), the State funds (the total matching funds for the Title V allocation - match and overmatch), Local funds (total of MCH dedicated funds from local jurisdictions within the state), Other federal funds (monies other than the Title V Block Grant that are under the control of the person responsible for administration of the Title V program), and Program Income (those collected by State MCH agencies from insurance payments, Medicaid, HMO’s, etc.)
Types of Services - The major kinds or levels of health care services covered under Title V activities. See individual definitions under “Infrastructure Building,” “Population Based Services,” “Enabling Services” and “Direct Medical Services.”
Youth Risk Behavior Survey (YRBS) - A national school-based survey conducted annually by CDC and State health departments to assess the prevalence of health risk behaviors among high school students.
YRBSS - Youth Risk Behavior Surveillance System - The YRBSS monitors six types of health-risk behaviors that contribute to the leading causes of death and disability among youth and adults. YRBSS includes a national school-based survey conducted by CDC and state, territorial, tribal, and local surveys conducted by state, territorial, and local education and health agencies and tribal governments.
The YRBSS includes:
YRBSS also measures the prevalence of obesity and asthma among youth and young adults.
- Behaviors that contribute to unintentional injuries and violence
- Tobacco use
- Alcohol and other drug use
- Sexual risk behaviors
- Unhealthy dietary behaviors
- Physical inactivity