III.E.2.c. Cross-Cutting/Systems Building: Application Year (10/1/2022-9/30/2023)

State Priority Need:

Reduce Health Disparities and Inequities in internal programs, policies, and practices to improve maternal and child health.

State Performance Measure (2020 - 2025):

SPM: Reduce health disparities and inequities in internal programs, policies, and practices to improve maternal and child health.

The Genomics and Newborn Screening (GNBS) program will collaborate with the Children Special Health Care Services (CSHCS) program to streamline coverage for metabolic formula in Indiana. Currently, the GNBS program funds genetic clinics to prescribe and coordinate eligibility requirements for state coverage of metabolic formula. The CSHCS currently covers metabolic formula claims as well. Through this collaboration we will reduce the duplicative services and coverage while ensuring individuals with inborn errors of metabolism receive the necessary metabolic formula. We plan to hire a metabolic formula program coordinator for the CSHCS program who would be responsible for the management of the metabolic formula program. The dieticians will remain as the prescriber while working with the metabolic formula program coordinator to ensure patients receive the necessary formula.

MCH has recently submitted updates to their internal policies for implementing the Safety PIN grant program. These updates look to help reduce health disparities within infant mortality that are seen across Indiana. These updates should also help to decrease current burdens on grantees and strengthen programming. The updates will be utilized moving forward and include:

1. Language for components of the application that will be required by IDOH.
2. Create a list of other considerations to be applied to applications beyond those listed in IC Section 16-46-14.
   1. Infant mortality rate (IMR) in targeted area
   2. Disparity ratio of IMR in targeted area
   3. Level of evidence and reasonableness of proposed intervention
   4. Cultural appropriateness of intervention
   5. Size of catchment area
   6. Emphasis on reaching populations experiencing disproportionately worse birth outcomes
   7. Evidence of partnership within the community
   8. Amount and array of existing services in the area
   9. Degree to which applicant will improve identified birth outcomes/measurable behavioral & secondary outcomes.
3. Switch from using the initial award being 60% and the potential bonus award being 40% to using a 50% and 50% system.
4. Utilizing 5-year aggregated county level infant mortality rates to compare for the bonus award instead of annual regional rates.

The Division of Nutrition and Physical Activity (DNPA) has continued to prioritize health equity and the reduction of health disparities for the past few years with our grant funding formula. While we previously prioritized specific counties that have less access to resources, we have more recently prioritized communities that have a higher-than-average Social Vulnerability Index. This allows us to prioritize funding for those parts of the state that have a higher need in the areas of socioeconomic status, household composition, race/ethnicity/language, and housing/transportation. We have also included interviews in some of our grantee application processes, which helps us to learn more about the projects and not be so focused on “how well the grant was written” or if the community has a grant writer. This has allowed us to fund new organizations that have great ideas related to policy, system, and environmental change for nutrition and physical activity initiatives.

The Division of Fatality Review and Prevention (FRP) will continue monthly internal staff trainings on Uprooting Inequalities and will continue to implement decision making practices that prioritize resources to communities at highest risk for preventable fatalities.

State Priority Need:

Engage Families and Youth with diverse life experiences to inform and improve MCH services.

State Performance Measure (2020 - 2025):

SPM: Engage families and youth with diverse life experiences to improve MCH services.

The Teen Pregnancy Prevention program is currently engaging youth and their caregivers through surveys and stakeholder interviews. Currently, feedback on the Botvin Lifeskills and Parent and Teen WoWTalk cafes are provided on post-programmatic surveys. The surveys include questions on ways to improve the program or the facilitator. A youth advisory board has been interviewed to determine what needs they saw in their community and what resources they are lacking. This project is looking to expand upon the feedback and potentially utilize IDOH’s advisory board for further feedback and information on the life experience of teens.

CSHCS has actively engaged with two special needs family organizations for many years, About Special Kids and Family Voices. Both organizations hire family members that have navigated the system and that have a passion for helping others with this process. This past year, the organizations formed a new organization to ensure that families’ needs were met comprehensively and to reduce funding competition. The CSHCS director was actively engaged throughout the process. In January 2022, the organizations became Indiana Family to Family. Indiana Family to Family will be building relationships with local clinics, community centers, and parent cafes to ensure that caregivers who have a child/youth with special healthcare needs can be connected with the organization. The goal is to promote leadership and empowerment in local communities.  CSHCS Title V and Indiana Family to Family are both collaboratively engaged in system improvement projects. In addition, Indiana Family to Family is utilized as a resource with other Title V grantees, as well as the CSHCS program within IDOH. 

CSHCS’s partnership with the statewide organization Foster Success has also provided an opportunity to ensure that youth are empowered to be decision makers.  Foster Success is a statewide organization that provides services and resources for youth that have been in the foster care system for at least one day.  The organization currently has a program that trains youth leaders.  When a Title V grantee has an idea about system improvement that will benefit this population, they are able to utilize the youth leadership group to provide feedback. 

The DNPA primarily focuses on increasing physical activity among children and adolescents with Title V funding. With this funding, we target our initiatives for schools and after school programs, in addition to improving and beautifying the built environment. It provides a diverse life experience so that children and adolescents can feel safe to walk or bike to school or to the park. A diverse life experience is the result of children having unique physical activity experiences after school or during the classroom time.

One area with limited research that can improve the services MCH provides is the paternal or fatherhood experience. Paternal health and fatherhood in general are affected and in turn can affect conception, birth, and the life-course of the child pregnant and birthing person. There are critical considerations to better understand the role of the father figure and how the physical, emotional, and social conditions can affect the people and environment around them. Additionally, paternal figures and fathers should be included in the conversation of overall maternal health. Social support substantially affects the experiences and conditions felt by the pregnant person, even though just perception. In the most recent Title V Needs Assessment for Indiana, men were included in focus groups and the survey and there were clear needs caregiver for greater support, better services around mental health, and greater knowledge around birth and the postpartum experience. With this, there needs to be more dedication to building the capacity and putting more services in the promotion of health and wellness, healthy behaviors, and health access.

In response, MCH has formed a paternal health workgroup with internal members of MCH to discuss the issues that are facing fathers and plans on how to meaningfully approach this gap. This paternal health workgroup will also work to identify and connect with local and community actors that are working with fathers to include state agency partners, advocacy groups, and others to better understand the current capacities and needs of Indiana. Once needs and current capacities have been identified, MCH will hire a Paternal Health Coordinator to begin program development to support fathers, paternal figures, and men of reproductive age.  

The Indiana Early Hearing Detection and Intervention Program (EHDI) along with our state Center for Deaf and Hard of Hearing Education (also housed in the Indiana Department of Health) is developing a Young Adult Deaf and Hard of Hearing (DHH) Video project. We have asked for young (ages 16-30) DDH adults to apply to participate in the project. Each young adult will be videotaped answering several similar questions regarding the challenges and successes they have experienced through their journey. The videos will be available to families of newly diagnosed DHH children upon diagnosis and other families through sharing with state stakeholders.  We also intend to share these videos with educators so that they can be shown in schools. Some DHH children are the only students in their school with hearing loss and we know that hearing those stories and feedback from other DHH children can be empowering and encouraging.

State Priority Need:

Ensure Frequent Surveillance, Assessment and Evaluation of data drives funding, programming, and system change.

State Performance Measure (2020 - 2025):

SPM: MCH Data are analyzed and disseminated and used to inform Title V programming and funding allocations

The agency’s Office of Data and Analytics houses a full-time staff member focused on data trainings available for the entire agency. In the past, this has been an incredible asset to the agency, including MCH. However, the position has been vacant due to staff turnover and difficulty re-hiring among high competition for data analysts nationwide. The absence of this role for the agency has been a barrier to increasing data capacity and competency among agency staff, but other publicly available trainings are available online and staff are encouraged to utilize them. The Office of Data and Analytics is looking to rehire this position as soon as possible and the trainings provided will be provided to MCH staff to assist them in utilizing data for their own assessments and reporting.

The MCH Epidemiology Team will continue to provide data and advanced analyses for MCH staff to inform their work. This will include updated data slide decks, fact sheets, maps, and dashboards. The MCH Epi Team will also be linking more data in the fall of 2022, once final natality and mortality datasets are made available to utilize for linkages and analyses. This will include a new iteration of PRAMS and Vital Records linkages to allow mothers’ self-reported birth experiences, as shared in PRAMS, to better illuminate birth outcomes, as reported on the birth record.

Efforts are underway to collect and standardize home visiting data across the state. This will include hiring a new full-time data coordinator who will work with the multiple agencies conducting home visiting and utilizing different home visiting models. This new data coordinator will report to the MCH Epidemiology Director and work with the MCH Epi Team to ensure access to new data sources and to work toward data standardization amidst different models, collection standards, and procedures. The increased capacity to access and analyze home visiting data throughout the state will be a first-time effort for Indiana and provides a new opportunity to create a statewide home visiting analysis. More specifically, this project will aim to look at the enhanced referral system for home visiting and successes in connecting mothers with home visiting as early as possible in their pregnancies and efforts MCH can pursue to increase early access to home visiting.

The MCH Epi Team plans to embark on a deeper analysis of substance use data through the Perinatal Substance Use (PSU) Hospital Collaborative. Utilizing the PSU hospital data as the main source of statewide substance use data has been a staple for many years but relying on hospitals to self-report their counts of umbilical cord tests and Neonatal Abstinence Syndrome (NAS) diagnoses has become increasingly difficult due to limited staff and time within hospitals. For the first time since the creation of the PSU Collaborative, the MCH Epi Team will compile PSU hospital data with data from the Indiana Birth Defects and Problems Registry (IBDPR), the Indiana Hospital Association hospital discharge data, and data from lab results from a large portion of birthing hospitals across the state. By combining multiple data sources, the team will be able to create a more comprehensive picture of perinatal substance use and conduct several quality assurances to help promote more accurate data collection for the future. The connection of data from multiple sources and entities will also allow the MCH Epi Team to assess bias in substance use screening and NAS diagnosis, a first ever analysis for the PSU project. This comprehensive analysis will help to inform MCH and the Indiana Perinatal Quality Improvement Collaborative’s future efforts in ensuring that women are screened for substance use equitably and babies are born with the resources they may need as a result of substance exposure.

The DNPA knows the importance of data collection and surveillance in order to provide programming and funding across communities in Indiana. While the DNPA does not have an epidemiologist on staff, we turn to other program areas and the Data Analysis Team to help us stay current on BRFSS data as well as YRBS data and to look at correlations among different data points. In addition, the DNPA has helped to assist the MCH Division over the years for School Health Profiles and YRBS data collection. One of many reasons to collect data is the importance of this data for federal grant proposals. We also know we need to have baseline and target metrics for all grantees’ programs to be able to show an impact. We collect bi-monthly reports from our grantees, have virtual meetings, site visits, and an end of year report to show progress and impact.

The Early Hearing Detection and Intervention Program (EHDI) has initiated data sharing agreements with our state WIC and DCS (Division of Child Services) to improve our ability to find newborns who did not pass their newborn hearing screenings but are “lost to our follow up”. We now can share data with those agencies for families that we have received incorrect demographic information which has improved our ability to find newborns who need timely intervention. The data sharing agreement also allows us the opportunity to provide foster and adopted parents valuable and timely resources and education regarding diagnostic hearing testing and support for their child who has been diagnosed with permanent hearing loss. We have also analyzed data on DHH children which has resulted in our Part C early intervention program adding covered bone anchored hearing aids for those children.  The EHDI program works closely with the Genomics Newborn Screening team to review and contribute data to the Birth Defects Registry in order to improve data accuracy to inform state stakeholders. We are working with the Genomics Newborn Screening PGG committee to evaluate data to start a pilot study regarding screening for CMV in Indiana, which is quickly becoming a reality in the United States.

State Priority Need:

Strengthen Mental, Social, and Emotional Well-being through partnerships and programs that build capacity and reduce stigma.

State Performance Measure (2020 - 2025):

SPM: Strengthen mental, social, and emotional health and well-being through partnerships and programs that build capacity and reduce stigma.

CSHCS and MCH have several members that attend a cross agency collaboration meeting that ensures that Indiana is comprehensively improving systems for children, youth, and families.  The group put together a document that detailed all services provided by state organizations. Indiana 211 is currently working on the document to ensure it is family friendly.  In addition, the group is working to train all state employees on the document to promote awareness and decrease duplication in systems.  The document demonstrated the need for state agencies to collaborate for best outcomes for child, youth, and families.

In many of the DNPA-funded grants, we promoted the importance of mental health and well-being. We recommend that schools and after school organizations included social and emotional learning in their programming. The DNPA also recently became more informed and educated on trauma-informed approaches and asked future grantees to consider being trauma-informed in their program planning. One of the DNPA grantees, Playworks, has recently added Social, Emotional Learning into their suite of services and information to provide to schools.

The Early Hearing Detection and Intervention Program (EHDI) Guide by Your Side parent to parent support program has initiated monthly live parent meetings and have included one of the national Hands and Voices programs, “Fostering Joy”. The program provides support and resources for families and professionals. The premise of the program is that “Loving and supportive families provide a strong base for social and emotional health and well-being.” This program has also been included in our annual EHDI Family Conference that is free to families with deaf and hard of hearing children in our state.

Be Happy:

The MCH division will continue its partnership with IU School of Medicine’s Be Happy program. As reported in the annual report, Be Happy was piloted in 2019, and officially launched in 2020 with support from HRSA’s Pediatric Mental Health Access grant. This grant closely aligns with the work of Title V, and the Title V director will continue to serve on its advisory board. Be Happy supports health care providers in their local communities with guidance from psychiatric specialists. Primary care providers (PCPs) are typically more accessible to families than behavioral health specialists (for example, psychiatrists, psychologists) but often lack the training or support to assess or treat youths’ mental health disorders independently. This can result in both under-an-over-prescription of medications, delays in receiving appropriate care leading to worsening symptoms, and other potentially harmful and costly outcomes.

Be Happy continues to provide consultation to the PCPs using on call psychiatrists, referrals to community-based programs (when available), and educational opportunities for PCPs.  In the upcoming year the Title V team, as well as others in the Be Happy Advisory Board will examine sustainability for the program, as well as the possibility of adding additional population supports. Ideally, Indiana could use this model and infrastructure to support on-call advice for PCPs treating pregnant women/persons, as well as the general Title V population.