Title V of the federal Social Security Act of 1935, also known as the Maternal and Child Health (MCH) Services Block Grant, is the oldest federal‐state partnership to support the health and well‐being of all mothers, children, and families, particularly those with special health care needs.

Illinois’ Title V Maternal and Child Health Services Block Grant Program is administered by the Illinois Department of Public Health (IDPH), Division of Maternal, Child, and Family Health Services, within the Office of Women’s Health and Family Services. A subaward is provided to the University of Illinois at Chicago Division of Specialized Care for Children (UIC- DSCC) for programming for children and youth with special health care needs (CYSHCN), as specified in state statute. The annual Title V allocation for Illinois is approximately $21 million.

The Office of Women's Health and Family Services (OWHFS) is one of six programmatic offices within IDPH. The vision of OWHFS is "a future free of health disparities, where all Illinoisans have access to continuous high-quality health care." The mission of OWHFS is to “improve health outcomes of all Illinoisans by providing preventive education and services, increasing health care access, using data to ensure evidence‐based practice and policy, and empowering families.” OWHFS houses three divisions: Division of Maternal, Child and Family Services, Division of Women's Health Services, and Division of Population Health Management. These divisions work together closely and are united by a common vision and mission to support women’s and family health across the lifespan.

Illinois’ program for CYSHCN has been administered by UIC-DSCC for more than 80 years. UIC-DSCC envisions that “children and youth with special health care needs and their families will be at the center of a seamless support system that improves the quality of their lives” by partnering with Illinois families and communities to help children and youth with special health care needs connect to the services and resources they need.

Role of Title V Program

A state’s Title V Program is viewed as a leader within the Maternal and Child Health field, convening stakeholders, disseminating data, and implementing best practice programs to improve population health. Title V leadership sit at many state and local tables to ensure that priorities are aligned and that opportunities to utilize Title V funds are leveraged appropriately. The Illinois Title V Program uses our position to assist in health care systems issues, such as quality of services, adequacy of insurance, and improving health literacy. It is also our role to reiterate how the social determinants of health impact Illinois’ ability to be healthy.

Illinois has a large, complex, and inter‐related set of maternal and child health programs that span the life course from pre‐ conception through adulthood that support primary, secondary, and tertiary direct, enabling, and infrastructure‐building interventions. The two entities responsible for Title V Programing are IDPH and UIC-DSCC. Title V is the only commitment of federal resources with a mission broad enough to encompass this full range of activity and provide a framework for integrating them into a coherent system that benefits all women, infants, children, adolescents, young adults, and CYSHCN.

In July 2013, Illinois’ Title V Program was transferred from the Illinois Department of Human Services (DHS) to IDPH, representing a shift from targeted direct services to a population‐health perspective. One prime example of population health programming includes funding the regional perinatal health program which supports ten administrative perinatal centers to provide training, support, and technical assistance to an assigned network of the state’s birthing hospitals. This program positively impacts virtually 100% of mothers giving birth in Illinois hospitals and their infants.

UIC-DSCC provides care coordination services through two programs. The Core Program serves CYSHCN who are under 21 years of age, reside in Illinois, and have any of 11 system-based categories of health impairments. Financial assistance (filling gaps in health insurance) is available to Core Program families with incomes below 325% of the federal poverty standard. The Home Care Program is the single point of entry for medically-complex children who require in-home shift nursing services. UIC-DSCC has an interagency agreement with the Illinois Department of Healthcare and Family Services (HFS) to operate Illinois’ Medicaid waiver for medically fragile and technology dependent children and to coordinate care for less medically-complex children who receive in-home nursing services through the state’s Medicaid program.

UIC-DSCC uses the six core outcomes of systems of care specified by the federal Maternal and Child Health Bureau (MCHB) for CYSHCN as its framework for needs assessment and priority setting. Review of state and national data indicate that care coordination and transition remain important priorities for Illinois’ CYSHCN.

Population Needs and Title V Priorities

In 2017, there were 2.5 million women of reproductive age and approximately 145,000 births in Illinois. Illinois is a racially diverse state. Among Illinois resident live births in 2017, approximately 53% were to white women, 17% were to black women, 21% were to Hispanic women, and 8% were to non-Hispanic women of other races (includes Asian, Pacific Islander, American-Indian and multiple-race women). In 2017, there were just over 3 million children ages 0-18 years in Illinois, equating Illinois to the state with the fifth highest child population in the United States.

Approximately two thirds of the Illinois population reside in Cook County (which includes Chicago) and the five surrounding counties. The remainder of the population lives in smaller urban areas or rural areas. There is substantial geographic variation in the availability of health care, which impacts maternal and child health outcomes.

It is the responsibility of Illinois’ Title V Program to identify needs, priorities, and strategies in six population domains (women/maternal, perinatal/infant, child, CYSHCN, adolescent, and cross-cutting). This is completed through a comprehensive needs assessment processing conducted every five years. Illinois’ 2015 Title V Needs Assessment included quantitative and qualitative data analysis, focus groups, and key information interviews. The findings of the 2015 Needs Assessment led to the development of the priorities listed below and a state action plan with strategies for the 2016‐2020 cycle of the Title V Block Grant.

The current priorities and corresponding population domain for Illinois are listed here:

1. Assure accessibility, availability, and quality of preventive and primary care for all women, particularly for women of reproductive age – women/maternal
2. Support healthy pregnancies and improve birth and infant outcomes – perinatal/infant
3. Support expanded access to and integration of early childhood services and systems – child
4. Enhance the capacity of families to connect CYSHCN to the health and human services they require – CYSHCN
5. Empower adolescents to adopt healthy behaviors – adolescent
6. Assure appropriate transition planning and services for adolescent and young adults, including youth with special heath care needs – adolescent and CYSHCN
7. Assure that equity is the foundation of all decision making; eliminate disparities in MCH outcomes – cross-cutting
8. Support expanded access to and integration of mental health and substance use services and systems for the MCH population – cross-cutting
9. Partner with consumers, families, and communities in decision‐making across MCH programs, systems, and policies – cross-cutting
10. Strengthen the MCH capacity for data collection, linkage, analysis, and dissemination; improve MCH data systems and infrastructure – cross-cutting

The next five-year needs assessment will be due in July 2020.

Title V Partnerships

Continued collaboration with key stakeholders is essential to Illinois achieving its priorities for the Maternal and Child Health Services populations. The Illinois Title V Program will continue to serve as a convener, assuring that the goals for the Title V Program are aligned with the other projects serving this population, including the Governor’s Office of Early Childhood Development, Healthy Start, the State Health Improvement Plan, Medicaid managed care organizations, and Evidence‐ Based Home Visiting Programs, such as the Maternal, Infant, and Early Childhood Home Visiting Program (MIEHCV).

The Illinois Title V Program also works closely with the Illinois Department of Human Services (DHS), the former home of the Title V Block Grant. In addition to providing IDPH with programming for the state match requirements, the two sister agencies work together on special projects. For example, DHS is in the process of rewriting their administrative rules for several of their maternal and child health programs, including the programs used for Title V maintenance of effort and match. DHS has asked the Illinois Title V Program to be at the table to help with the revision of these rules, to ensure that the programs implemented are in line with Title V priorities.

Illinois’ Title V Program further diversifies its partnerships through grant-funded activities that align with the chosen priorities. Funded entities include, but are not limited to:

• School-based health centers
• Regional Perinatal Health Program’s ten Administrative Perinatal Centers
• Illinois Perinatal Quality Collaborative
• State universities
• Community organizations
• Local health departments

In Illinois, the public health system is decentralized. Local health departments are able to apply for special projects funded by the Illinois Title V program including the Adolescent Health Initiative and the well-woman care mini grant program. There is also local health department representation on several state level workgroups including the Perinatal Advisory committee, the Maternal Mortality Review Committees and the Neonatal Abstinence Syndrome Advisory Committee.

UIC-DSCC works closely with state agencies and community-based organizations to coordinate care and strengthen systems for serving CYSHCN. These include HFS, IDPH, DHS (which includes Illinois’ Part C Early Intervention, home visiting, and other early childhood programs, behavioral health, developmental disability, and rehabilitation services programs), the Department of Children and Family Services (DCFS, Illinois’ child welfare agency), the Illinois State Board of Education (ISBE), local schools, children’s hospitals, pediatric primary and specialty care providers, licensed home nursing agencies, durable medical equipment vendors, and numerous public health, human service, and allied health care providers. UIC-DSCC collaborates with these organizations through advisory committees and work groups, clinic attendance, community meetings, and other strategies.

Highlights from the Illinois Title V Program

The Illinois Title V Program at IDPH is participating in a cross-disciplinary Collaborative, Improvement, and Innovation Network (CoIIN) to reduce infant mortality by addressing the social determinants of health. Through focus groups and informal discussion with health care providers, the Illinois CoIIN team identified child care, or lack thereof, during pregnancy, childbirth, and postpartum as a non-traditional social determinant of health that may negatively impact health outcomes for the mother and her baby. The first step to making the case for changes in policy/procedures at the local, community, and state level which could improve outcomes for families is to document the presence and extent of the problem. Thus, the Illinois CoIIN team has developed a three-pronged approach to collect data: survey birthing hospitals, survey Federally Qualified Health Centers, and interview Healthy Start clients. These results will be combined to quantify and describe the issue in Illinois and develop optional strategies and approaches that could be implemented in clinical settings to address child care.

UIC-DSCC is collaborating with other system partners to improve the quality of life for CYSHCN through workforce development. Through participation in hospital and clinic rounds, several UIC-DSCC staff recognized a problem with the quality of care provided by nurses working in the home setting. UIC-DSCC staff and the pulmonary team at Ann and Robert H. Lurie Children’s Hospital of Chicago partnered together to develop an advanced training program for nurses who provide in-home care to medically fragile and technology-dependent children, youth, and adults. Through this partnership, the Lurie team developed the content of the training, but UIC-DSCC has gained the intellectual rights to the training content and materials. This will allow UIC-DSCC to share this training content with children’s hospitals in other areas of the state. UIC- DSCC provides continuing nursing education credits to participants.