III.A1. Program Overview
Illinois’ Title V allocation is approximately $21 million annually and the program is administered by the Illinois Department of Public Health (IDPH), Office of Women’s Health and Family Services (OWHFS), Division of Maternal, Child, and Family Health Services. Programming for children and youth with special health care needs (CYSHCN) is developed and administered by the University of Illinois at Chicago, Division of Specialized Care for Children (UIC-DSCC) through a subaward mandated by state statute.
IDPH
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." OWHFS’ mission 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.” There are three divisions within the office – (1) Maternal, Child, and Family Services; (2) Women's Health Services; and (3) Population Health Management. All three divisions work together to support women’s and family health across the lifespan.
UIC-DSCC
UIC-DSCC has administered Illinois’ CYSCHN programs for more than 80 years. It envisions “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.” To accomplish its goals, UIC-DSCC partners 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 Illinois Title V
Illinois’ Title V Program (Title V) is viewed as a leader in the maternal and child health field. It convenes stakeholders, disseminates data, and implements best practice programs to improve population health. Title V leadership sits at many state and local tables to ensure that priorities are aligned and that opportunities to utilize Title V funds are leveraged appropriately. In addition, it uses its position to assist in addressing health care system challenges, such as improving the quality of services, highlighting the need for adequacy of insurance, improving health literacy, and emphasizing the importance of addressing social determinants of health in the MCH population.
Title V has a large, complex, and inter‐related portfolio of maternal and child health programs that span the life course from pre‐conception through adulthood. The programs focus on primary, secondary, and tertiary prevention in the form of direct, enabling, and infrastructure‐building interventions. Title V is the only commitment of federal resources in the state with a mission broad enough to encompass this full range of activities and provide a framework for integrating them into a coherent system that benefits all women, infants, children, adolescents, young adults, and CYSHCN.
In addition to the role IDPH plays in Title V, UIC-DSCC’ also plays a key role. UIC-DSCC provides care coordination services through three programs: (1) the Core Program which serves youth from birth to age 21 with medically eligible conditions, (2) Connect Care Program which serves youth from birth to age 21 with special health care needs who are enrolled in a Medicaid HealthChoice Illinois plan that has a contract with UIC-DSCC for care coordination, and (3) Home Care Program that serves children and youth in need of in-home shift nursing. The primary program funded through Title V is the Core Program. Participants in the Core Program are not only under the age of 21 years and reside in Illinois, but also have one or more of the 11 system-based categories of health impairments. UIC-DSCC offers financial assistance (filling gaps in health insurance) 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. The Connect Care Program serves the CYSHCN who are enrolled in a Medicaid managed care plan who has contracted with UIC-DSCC.
Population Needs and Title V Priorities
In 2020, there were 2.5 million women of reproductive age and approximately 134,000 births in Illinois. Among Illinois resident live births in 2020, approximately 55% were to White women, 17% were to Black women, 22% were to Hispanic women, and 6% were to non-Hispanic women of other races (includes Asian, Pacific Islander, American Indian, and multiple-race women). In 2020, there were 2.8 million children ages 0-18 years in Illinois, which ranks Illinois as the fourth highest child population state.
Nearly three-fourths of the Illinois 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.
Recognizing the differences and challenges in MCH across the state, Title V regularly conducts needs assessments to identify needs, priorities, and strategies. In 2020, IDPH and UIC-DSCC collaborated with the UIC School of Public Health’s Center of Excellence in Maternal and Child Health (CoE-MCH) to conduct the 2020 Title V Needs Assessment. This needs assessment set the priorities and strategies for Title V for five years (2021-2025). The process was guided by a framework that included: (1) the assessment of health status, service needs, and system capacity related to each population domain; (2) the development of Title V priorities; (3) the assessment of the workforce and agency capacity; and (4) the development of an 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 Title V Leadership and staff; consumer listening sessions; and surveys designed to determine workforce capacity, assess partners’ views of Illinois Title V’s capacity, and gather public/consumer input.
The 10 priorities that will guide Illinois Title V activities over the grant cycles covering 2021–2025 are provided below by population domain.
Domain: Women/Maternal Health
- Assure accessibility, availability, and quality of preventive and primary care for all women, particularly for women of reproductive age.
- 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
- Support healthy pregnancies to improve birth and infant outcomes.
Domain: Child Health
- Strengthen families and communities to assure safe and healthy environments for children of all ages and to enhance their abilities to live, to play, to learn, and to grow.
Domain: Adolescent Health
- 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
- Strengthen transition planning and services for adolescents and young adults, including youth with special health care needs.
- 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
- Strengthen workforce capacity and infrastructure to screen for, assess, and treat mental health conditions and substance use disorders.
- Support an intergenerational and life course approach to oral health promotion and prevention.
- Strengthen MCH epidemiology capacity and data systems.
Title V Partnerships
Title V
Identifying and partnering with key stakeholders across Illinois is essential to Title V achieving its priorities for MCH populations. Convening stakeholders and leveraging partnerships helps ensure that the goals of Title V are aligned with the other projects serving women and children. Key partners include the Governor’s Office of Early Childhood Development (GOECD), Healthy Start, University of Illinois at Chicago (UIC) Innovations to ImPROve Maternal OuTcomEs in Illinois (I PROMOTE-IL), Medicaid managed care organizations, and evidence‐based home visiting programs, such as the Maternal, Infant, and Early Childhood Home Visiting Program (MIECHV) that now is located in the Illinois Department of Human Services (DHS).
Title V’s relationship with DHS extends beyond MIECHV. DHS provides IDPH with programming for the state maintenance of effort and match requirements through its Family Case Management/High Risk Infant Follow up; Youth Services Training, Technical Assistance, and Support; and All Our Kids Early Childhood Network programs. DHS also serves as a collaborator on special projects, such as the statewide Safe Sleep campaign.
Title V statewide reach is further expanded through the grant programs it administers and the state workgroups it convenes. The grant programs fund a variety of entities, such as school-based health centers, administrative perinatal centers, Illinois Perinatal Quality Collaborative, state universities, local health departments, and community organizations. A key benefit of these grant-funded programs is the ability to leverage relationships with the local health departments (LHDs), especially in light of Illinois’s decentralized public health system. A key program that highlights Title V’s relationships with LHDs is the Adolescent Health Program. This program funds the development and implementation of projects tailored to local MCH population’s needs. In addition to participating in grant-funded programs, representatives from LHDs serve on state level workgroups, such as the Perinatal Advisory Committee and the Maternal Mortality Review Committees.
UIC-DSCC
UIC-DSCC also partners closely with state agencies and community-based organizations to coordinate care and to strengthen systems for serving CYSHCN. These partners include the Illinois Department of Healthcare and Family Service (HFS), IDPH, DHS (which houses Illinois’ Part C Early Intervention, home visiting, and other early childhood, behavioral health, developmental disability, and rehabilitation services programs), the Illinois 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.
Program Evaluation and Highlights from Title V
Evaluation Efforts
Title V utilizes various methods to evaluate the implementation and administration of its portfolio of programs. These methods include monthly reimbursement forms that help to monitor the use of Title V funds received and ensure compliance with federal rules and regulations. In addition, all organizations supported by Title V provide quarterly progress reports and end-of-year reports that provide Title staff with updates on the progress of projects and any relevant accomplishments during the designated period of time. The reports also provide the staff insight on any challenges encountered, technical assistance needed, and any emerging issues that may need to be addressed or incorporated into the program in the future. Site visits are also used to evaluate some of the programs such as the Administrative Perinatal Center Grant Program and the School-Based Health Center Grant Program. Title V plans to include site visits in additional programs in the near future.
Besides reports and site visits, Title V staff holds regularly scheduled meetings with its partners. Some meetings are monthly while others are held quarterly. These additional meetings allow for a more in-depth discussion of the progress of projects that are not captured in the written reports.
In FY21, IDPH released its second edition of the Illinois Maternal Morbidity and Mortality Report. The second report built on the important work of two IDPH committees, the Maternal Mortality Review Committee (MMRC) and the Maternal Mortality Review Committee for Violent Deaths (MMRC-V), which was captured in Illinois’ first report released in 2018. In the second report, IDPH continued to highlight statewide patterns in maternal health and provide recommendations directed at key stakeholders to prevent maternal mortalities and morbidities. Additionally, the report expanded the discussion to include factors that play a role in maternal health and contribute to the health disparities and inequities observed in Illinois’ maternal health outcomes, such as redlining. The report raises difficult topics and issues that are essential to addressing the challenges of maternal healthy and truly identifying strategies that improve health outcomes for all women, children, and families across Illinois and the country.
UIC-DSCC Highlight
Fiscal year 2021 (FY21) was the first year UIC-DSCC had a full year of family survey available with updated surveys and survey analytic reporting in Power BI. During FY21 families were sent initial surveys, annual surveys, exit surveys, and surveys at different times during the transition to adulthood years. Survey questions utilize a Likert scale of 1-5 with 1 being strongly disagree and 5 strongly agree. UIC-DSCC is pleased to report that for FY21 the average response to the question about UIC-DSCC involvement helping to contribute to an improved quality of life for the participant and family scored 4.40 on average. On the transition survey average response to the question about UIC-DSCC helping to support transition related goals was 4.43. UIC-DSCC will be working into FY22 to continue to improve analytic reporting related to family surveys and to deploy a family survey focused on educational needs of the participant.
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