III.A.1 Program Overview

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, including those with special health care needs, and families.

Illinois receives approximately $21 million for its Title V Maternal and Child Health Services Block Grant Program. Division of Maternal, Child, and Family Health Services within the Office of Women’s Health and Family Services for the Illinois Department of Public Health (IDPH) administer the program. A sub award, as specified in state statute, is provided to the University of Illinois at Chicago, Division of Specialized Care for Children (UIC- DSCC). UIC-DSCC is responsible for developing and administering programs for children and youth with special health care needs (CYSHCN).

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.

UIC-DSCC has administered Illinois’ CYSCHN programs 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 IL Title V

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. IL Title V leadership sit at many state and local tables to ensure that priorities are aligned and Title V funds are leveraged appropriately. In addition, IL Title V uses its position to highlight and address health care systems issues, such as quality of services, adequacy of insurance, improvement of health literacy, and the impact of social determinants of health on the MCH population.

Illinois has a large, complex, and inter‐related portfolio of maternal and child health programs that span the life course from pre‐ conception through adulthood. Programs support primary, secondary, and tertiary prevention and can be classified as direct, enabling, or infrastructure‐building interventions. Currently, 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. This represented a shift from targeted direct services to a population‐health perspective. One prime example of population health programming includes the funding of the regional perinatal health program which supports ten (10) 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.

As previously stated, UIC-DSCC has administered Illinois’ CYSCHN programs for more than 80 years. It 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. Currently, UIC-DSCC provides care coordination services through two programs, the Core Program and the Home Care Program. 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.

Population Needs and Title V Priorities

Illinois is a racially diverse state, and in 2017, there were 2.5 million women of reproductive age and approximately 145,000 births. Among the 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, which included Asian, Pacific Islander, American Indian and multiple-race women. The live births coupled with children already residing in Illinois in 2017, totaled just over 3 million children between the ages 0 and18 years. This ranks Illinois as the fifth state in the country with the largest child population.

Approximately, two-thirds of Illinois’ overall population resides in Cook County (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 MCH outcomes.

IL Title V identifies needs, priorities, and strategies. These activities are completed through a comprehensive Needs Assessment process conducted every five years. Illinois’ 2020 Title V Needs Assessment was conducted by IDPH and UIC-DSCC in collaboration with the UIC School of Public Health’s Center of Excellence in Maternal and Child Health (CoE-MCH). A framework that included guided the process: (1) the assessment of health status, service needs, and system capacity related to each population domain; (2) the development of Title V priorities for 2021-2025; (3) the assessment workforce and agency capacity; and (4) the development of a final Action Plan. Information was gathered through an Expert Panel (EP) and Advisory Council (AC) that provided feedback on the state’s MCH needs, priority selection, and strategy identification; key Informant Interviews with IL Title V Leadership and staff; consumer listening sessions; and surveys designed to determine workforce capacity, assess partners’ views of IL Title V’s capacity, and gather public/consumer input.

The ten (10) priorities developed during the Needs Assessment will guide IL Title V activities over the course of the next five years (2021-2025) and are provide below by population domain.

Domain: Women/Maternal Health

1. Assure accessibility, availability, and quality of preventive and primary care for all women, particularly for women of reproductive age.
2. Promote a comprehensive, cohesive, and informed system of care for all women to have a healthy pregnancy, labor and delivery, and first year postpartum. 

Domain: Perinatal/Infant Health

3. Support healthy pregnancies to improve birth and infant outcomes.

Domain: Child Health

4. Strengthen families and communities to assure safe and healthy environments for children of all ages and enhance their abilities to live, play, learn, and grow.

Domain: Adolescent Health

5. Assure access to a system of care that is youth-friendly and youth-responsive to assist adolescents in learning and adopting healthy behaviors.

Domain: Children and Youth with Special Health Care Needs

6. Strengthen transition planning and services for children and youth with special health care needs.
7. Convene and collaborate with community-based organizations to improve and expand services and supports serving children and youth with special health care needs.

Domain: Cross Cutting

8. Strengthen workforce capacity and infrastructure to screen for, assess and treat mental health conditions and substance use disorders.
9. Support an intergenerational and life course approach to oral health promotion and prevention. 
10. Strengthen the MCH epidemiology capacity and data systems.

Title V Partnerships

Continued collaboration with key stakeholders is essential to Illinois achieving its priorities for the MCH populations. The IL Title V will continue to serve as a convener, assuring that the goals for the IL Title V are aligned with 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).

Additionally, the IL Title V works with the Illinois Department of Human Services (DHS), the former home of the Title V Block Grant. Not only does DHS provide IDPH with programming for the state match requirements, but also, the two sister agencies collaborate on special projects. For example, DHS is rewriting its administrative rules for several of maternal and child health programs in its portfolio, including the programs used for Title V maintenance of effort and match. The IL Title V is participating in this effort to ensure that the programs implemented are aligned with Title V priorities.

IL Title V further expands its statewide reach through its grant programs that fund various entities such as school-based health centers, Regional Perinatal Health Program’s ten Administrative Perinatal Centers, Illinois Perinatal Quality Collaborative, State universities, local health departments, and community organizations.

A key benefit of IL Title V expanding its reach through grant programs is the ability to navigate a decentralized public health system by leveraging relationships with local health department. IL Title V grants provide needed funding for local health departments to develop and implement projects targeted to MCH populations. Two grant programs of interest to the local health departments are the Adolescent Health Initiative and the Well-Woman Care Mini Grant Program. In addition to grant funding, IL Title V also secures local health department representation on its state level workgroups such as the Perinatal Advisory Committee and the Maternal Mortality Review Committees.

UIC-DSCC also partners closely with state agencies and community-based organizations to coordinate care and strengthen systems for serving CYSHCN. These partners include HFS, IDPH, DHS (which houses 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 leverages these relationships through advisory committees and work groups, clinic attendance, community meetings, and other strategies.

Highlights from the IL Title V

Illinois was one of the first states to implement a maternal mortality review, and created the state Maternal Mortality Review Committee (MMRC) in 2000. In 2015, Illinois formed a second state committee, the Maternal Mortality Review Committee on Violent Deaths (MMRC-V), to review deaths of women who died within a year of pregnancy due to homicide, suicide, or drug overdose.

In 2017, IDPH and IL Title V re‐designed its approach to the review process by strategically shifting to a population‐based and systems‐based approach. As a result of this re-design, IDPH released its first Illinois Maternal Morbidity and Mortality Report in October 2018. The Illinois General Assembly embraced the report and passed numerous state legislation during the 2019 Legislative Session. One of the most notable acts of the legislature was the expansion of Medicaid from 60 days to 12 months postpartum. Other legislation focused on maternal levels of care and insurance coverage requirement for mental health conditions that occur during pregnancy or during the postpartum period. Currently, IDPH is preparing a second report covering two additional years of maternal morbidity and mortality data.

In October 2018, UIC-DSCC along with Ann & Robert Lurie Children’s Hospital hosted the Nitty Gritty Nursing Conference.  The intended audience of this conference was nurses who cared for medically complex children in the home setting.  The conference was developed to address issues pertaining to the quality of nursing care provided in the home. One key area identified with this issue was the realization that the skills needed to care for medically complex children in a home setting went beyond the skills taught in nursing school.  While the team of experts at Lurie developed the content for this conference, UIC-DSCC obtained the intellectual rights to the material.  Approximately 75 people attended the event in October.  UIC-DSCC worked with OSF Saint Francis Medical Center Children’s Hospital of Illinois to host a similar event in the central part of the state using the same content developed by the Lurie team. Both events were a success, and The Nitty Gritty Nursing Conference was highlighted in a June 2019 Health Affairs article, “Home Health Care for Children with Medical Complexity: Workforce Gaps, Policy, & Future Directions,” as a model of targeted nurse education. This program illustrates IL Title V working with state partners to identify systemic issues and provide solutions for the MCH population.