Title V - The Maternal and Child Health Services Block Grant has operated as a Federal-State partnership since 1935, when the Social Security Act was passed. The Federal Government, through Title V, pledged its support of State efforts to extend health and welfare services for mothers and children. When the Title V program was converted to a block grant in 1981 seven categorical programs were consolidated: maternal and child health and services for children with special health needs; supplemental security income for children with disabilities; lead-based paint poisoning prevention programs; genetic disease programs; sudden infant death syndrome programs; hemophilia treatment centers; and adolescent pregnancy prevention grants.

Title X - The Title X Family Planning program was enacted in 1970 as Title X of the Public Health Service Act. Title X is the only federal grant program dedicated solely to providing individuals with comprehensive family planning and related preventive health services. The Title X program is designed to provide access to contraceptive services, supplies and information to all who want and need them. By law, priority is given to low income individuals.

Medicaid health insurance program for low income individuals jointly financed by the Federal and State governments and administered by the States.

State Children’s Health Insurance Plan (SCHIP) Jointly financed by the Federal and State governments and administered by the States, SCHIP was created to provide health insurance to children, whose families earn too much money to be eligible for Medical Assistance but not enough to purchase private health insurance.

Metabolic Screening Program States routinely test blood spots collected from newborns for up to thirty metabolic and genetic diseases of which the four most commonly included are phenylketonuria, congenital hypothyroidism, galactosemia, and sickle cell disease. Many states are also tasked with providing follow-up to infants identified through newborn screening programs, including ensuring appropriate diagnosis, treatment, and ongoing evaluation. In many cases, education is also a program responsibility along with counseling and provision of other ancillary services.
Universal Newborn Hearing Screening - Approximately 3 out of every 1,000 infants are born with significant hearing loss, making it the most common birth defect. Technology is currently available to conduct cost-efficient, physiological screening on a universal basis prior to hospital discharge. In 1993, less than 5 percent of all infants were screened for hearing loss prior to hospital discharge. Today, more than 90 percent of newborns are screened before hospital discharge. Universal newborn hearing screening prior to hospital discharge is now the standard of care in the United States.

Lead Screening - Childhood lead poisoning surveillance programs at estimate the extent of elevated blood-lead levels among children; assess the follow-up of children with elevated blood-lead levels; and, examine potential sources of lead exposure help allocate resources for lead poisoning prevention activities. These programs may be managed at the state health department or the state department of the environment.

Pregnancy Risk Assessment Monitoring System (PRAMS) This system was initiated in 1987 because infant mortality rates were no longer declining as rapidly as they had in prior years. The goal of the PRAMS project is to improve the health of mothers and infants by reducing adverse outcomes such as low birth weight, infant mortality and morbidity, and maternal morbidity. PRAMS provides state-specific data for planning and assessing health programs and for describing maternal experiences that may contribute to maternal and infant health.

Fetal and Infant Mortality Review (FIMR)- Since 1990, MCHB has funded the National Fetal and Infant Mortality (FIMR) Resource Center. FIMR is a community-based action method that examines a fetal or infant death as a sentinel event and mobilizes community action to improve services and resources for women, infants, and their families.

Child Death Review (CDR) - The National Center for Child Death Review is a resource center for state and local CDR programs, funded by the Maternal and Child Health Bureau. It promotes, supports and enhances child death review methodology and activities at the state, community and national levels. To conduct a comprehensive, multidisciplinary review of child deaths, to better understand how and why children die, and use the findings to take action that can prevent other deaths and improve the health and safety of children.

Family Case Management - Case management is defined by Medicaid as “an activity under which responsibilities for locating, coordinating and monitoring necessary and appropriate services for a recipient rests with a specific individual or organization.” These services may include, but are not limited to, administrative case management; outreach activities; targeted case management which provides services for individuals in a specific geographic area or a specific set of services; and, coordination of services among multiple programs.

Pediatric Primary Care often referred to as ‘well baby checks’ pediatric primary care focuses on the general health and well being of children up to the age of two. The overarching goal of this care is to administer immunizations; conduct weight and height checks; monitor progression of growth and developmental milestones; and, provide anticipatory guidance to parents/caregivers. This care can be provided in a variety of settings including, but not limited to private providers, federally qualified health centers, and local health departments.

School Health - A coordinated school health program brings together school administrators, teachers, other staff, students, families, and community members to assess health needs; set priorities; and plan, implement, and evaluate school health program activities. These components are: health education, health services, nutrition services, health promotion for school staff, physical education, mental health and social services, healthy and safe school environments, and family/community involvement. School health programs are most effective and efficient when all of the components are addressed together in a coordinated approach supported by school health councils, collective planning, administrative support, identified leaders, parents, and community members.

The following programs support maternal and child health

Women, Infants and Children (WIC) - Established as a pilot program in 1972 and made permanent in 1974, WIC is administered at the Federal level by the Food and Nutrition Service of the U.S. Department of Agriculture. WIC is not an entitlement program, rather a federal grant program that serves low income women and children. WIC provides nutritious foods, nutrition education and referrals to health and other social services at no charge. WIC serves low-income, pregnant, postpartum and breastfeeding women, infants and children up to the age of five who are at nutritional risk.

Vital Statistics Vital Statistics is charged with registering all births, deaths, and fetal deaths within a state; issuing certified copies of birth, death, and marriage certificates and providing divorce verifications; and compiling and analyzing vital statistics data.

Immunizations Immunizations prevent disease in the individuals who receive them and protect those who come into contact with unvaccinated individuals. Vaccines help prevent infectious diseases and save lives. Immunization programs are monitored by state health departments with the program being implemented in the private and public health care systems.

Early Periodic Screening, Diagnosis, and Treatment (EPSDT) Program is the child health component of Medicaid. It's required in every state and is designed to improve the health of low-income children, by financing appropriate and necessary pediatric services.

PHCCC Maternal and Child Health Target Activities Document Appendix B

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Appendix B

Detailed Description of Information Systems Supporting Maternal and Child Health

Lead Registry - CDC began collecting childhood blood lead surveillance data in April 1995. The national surveillance system is composed of data from state and local health departments. Because CDC does not obtain any identifying information about the child, the identification of duplicate test results and sequential tests on a single child, blood lead test results are maintained by the state in a child-specific database. In addition to blood lead test results, state child-specific databases contain follow-up data on children with elevated blood lead levels including data on medical treatment, environmental investigations, and potential sources of lead exposure. Surveillance fields for the national database are extracted from the state child-specific database and transferred to CDC.

Title X - Title X grantees submit yearly reports to the Office of Population Affairs (OPA) where they report on the scope of services or activities that were proposed in their approved grant application and supported with Title X grant funding. Reports are submitted electronically on OPAs web-based grant management system. The reported data includes but is not limited to: family planning client demographic data, economic and social profile of family planning users, family planning method, cervical and breast cancer screening, sexually transmitted disease screening, and family planning encounters and utilization of clinical staff.

Title V Title V grantees submit yearly report to the Maternal and Child Heatlh Bureau where they report on their activities that were proposed in their approved grant application. Reports are submitted electronically via a web based reporting system. States are required to report on eighteen (18) national performance measures which include but are not limited to: teen birth rate, newborns screened for hearing before hospital discharge, dental sealants, children with special health care needs that receive comprehensive care in a medical home, mothers who smoke during pregnancy, immunization rates for children, and obesity screening in children who participate in WIC. In addition, Congress has enacted a number of amendments to Title V adding requirements that the program work closely with and assist Medicaid in a number of activities. These activities include: coordination of EPSDT, coordination agreements with State Medicaid programs, provide a toll-free number for families seeking Title V or Medicaid providers; provide outreach and education to facilitate enrollment of Medicaid eligible children and pregnant women, share data collection responsibilities particularly related to infant mortality, provider service for children with special health care needs and disabilities not covered by Medicaid.

Pregnancy Risk Assessment Monitoring System (PRAMS) - is an ongoing state- and population-based surveillance system designed to collect information on self-reported maternal behaviors and experiences that occur around the time of pregnancy. PRAMS generates statewide estimates of perinatal health indicators among women who recently delivered a live infant. Each participating state uses a standardized data collection method developed by CDC. PRAMS staff in each state collect data with mail and telephone questionnaires. Because PRAMS data are state- and population-based, findings are generalizable to an entire state’s population of women delivering a live-born infant. PRAMS allows CDC and the states to monitor changes in maternal and child health indicators (e.g., unintended pregnancy, prenatal care, breast-feeding, smoking, drinking, infant health). PRAMS enhances information from birth certificates used to plan and review state maternal and infant health programs.

The Pregnancy Mortality Surveillance System (PMSS) - Since 1987, the CDC has conducted ongoing national surveillance of pregnancy-related mortality.The Pregnancy Mortality Surveillance System (PMSS) detects pregnancy-related deaths, analyzes factors associated with these deaths, and publishes information that may lead to state and national prevention strategies

Electronic Birth Certificate/Electronic Death Certificate Birth and death certificates are used in the United States for administrative and public health purposes and serve as the primary source of birth and death information. While the majority of birth certificates are handled electronically, completion of death certificates vary. An electronic death registration system is expected to reduce reporting delays, improve data quality, and increase the utility of death information.

Enumeration at Birth (EAB) the EAB program was established in 1989 as another means of improving the SSN process. This program is available in all States as well as the District of Columbia and Puerto Rico, and allows parents to indicate on the birth certificate information form whether they want an SSN assigned to their newborn child. States provide SSA with birth record information about newborns whose parents want a Social Security card for their child, and SSA then assigns an SSN and issues a card. This process greatly reduces the potential for someone to use another person's birth certificate to obtain a Social Security card..

Immunization Registries - These confidential, computerized information systems contain vaccination histories and provide immediate access to a child's current immunization status to authorized providers. As a centralized, secure site of single record storage they provide an official immunization record for school, day care, and camp entry requirements. These no-cost tools were created in conjunction with the Centers for Disease Control and Prevention and are available in every state. As families move in and out of both public and private health care systems, parents and providers can use registries as a powerful tool to ensure that the child receives timely immunizations and proper treatment. Using the registry public health departments can identify those children who are at risk in the event of a disease outbreak or other emergency such as hurricanes, earthquakes, floods or man-made disasters. They can locate communities with low coverage rates so that they can provide targeted interventions to increase coverage rates and protect more children from disease.

WIC Since 1992 State WIC agencies have been reporting a Minimum Data Set consisting of 20 variables from their management information systems to the Food and Nutrition Service of USDA. Data collected includes: income, nutrition risks, migrant status, pregnant, breastfeeding, postpartum, infant, child, age, race, weight, height and blood measures. In addition, another 13 supplemental data set items were requested from State data systems if they had the capability and included variables such as source of healthcare, education, number in household on WIC and birth weight.

Youth Risk Behavior Survey - The Youth Risk Behavior Surveillance System (YRBSS) monitors priority health-risk behaviors and the prevalence of obesity and asthma among youth and young adults. The YRBSS includes a national school-based survey conducted by the Centers for Disease Control and Prevention (CDC) and state, territorial, tribal, and local surveys conducted by state, territorial, and local education and health agencies and tribal governments. Unintentional injuries and violence, tobacco use, alcohol and other drug use, sexual behaviors that contribute to unintended pregnancy and sexually transmitted diseases, including HIV infection, unhealthy dietary behaviors, physical inactivity

Medicaid States submit eligibility data and claims tapes to the Centers for Medicare & Medicaid Services through the Medicaid Statistical Information System (MSIS).

EPSDT report - The CMS-416 provides basic information on participation in the Medicaid child health program. States provide CMS with the following information: the number of children provided child health screening services; the number of children referred for corrective treatment; the number of children receiving dental services; and, the State's results in attaining goals set for the state under section 1905(r) of the Act. The information is used to assess the effectiveness of State EPSDT programs in terms of the number of children (by age group and basis of Medicaid eligibility), who are provided child health screening services, are referred for corrective treatment, and the number receiving dental services. In addition, federal rules call for coordination with Title V which include establishment of written state MCH-Medicaid agreements which provide maximum utilization of Title V supported services and reimbursement of Title V providers for services rendered, even if such service are provided free of charge to low-income uninsured families.

Indian Health Service Resource and Patient Management System (RPMS)

• Obstetric Care Module to monitor First OB Visit, Follow up OB Visit, L&D / Consultant Visit, Post Partum

• Well Child Module has dynamically determined guidelines, dynamically customized for each specific well child visit

• Immunization Data Exchange Initiative to develop an electronic bi-directional immunization data exchange between RPMS and state Immunization Information Systems (IIS)