III.E.2.c. Children with Special Health Care Needs: Application Year (10/1/2023-9/30/2024)

State Priority Need:

Access to High-quality, family-centered, trusted care is available to all Hoosiers.

National Performance Measure (2020 - 2025):

NPM 11: Percent of children with and without special health care needs, ages 0 through 17, who have a medical home.

Evidence Based/Informed Strategy Measure (2020 - 2025): 

ESM 11.1: Percent of families who received effective care coordination.

ESM 11.2: Percent of children diagnosed with a condition identified through newborn screening who receive an annual assessment of services.

Indiana Children's Special Health Care Services division provides supplemental medical coverage to help families of children who have serious, chronic medical conditions, age birth to 21 years of age, who meet the program's financial and medical criteria, pay for treatment related to their child's condition. Indiana allocates 14.95 million per fiscal year. The CSHCS division has dedicated funds that serve individuals with sickle cell disease and 0-5 children with visual impairments. The Division of Children with Special Healthcare Services plans to continue their work in increasing care coordination and newborn screening through their work with their own team and their partnership with the Genomics and Newborn Screening team and Early Hearing Detection and Intervention team within MCH.

CSHCS recently hired a new manager of care coordination. The manager is currently evaluating and updating all policies and procedures. Major updates include ensuring all participates know their vaccination status and their insurance status. The team has been working in partnership with Indiana Medicaid to help participants understand changes to their insurance coverage due to the Medicaid Unwinding. In addition, the team has been providing information about the CSHCS program at resource fairs throughout the state. The team plans to continue and expand these efforts in the coming year. The CSHCS division recently welcomed their first ever intern who is receiving their master's degree in epidemiology. Through the intern’s work and assessment of all current and past data, they will be able to create a heat map of where services are being provided across the state of Indiana. This will bring attention to the need of continued data collection in order to improve the children’s division and provide accurate information about children and youth with special healthcare needs on the program.

The CSHCS team has a goal of increasing awareness of the CSHCS program and what we provide. The Integrated Community Services manager and part of the nurse's team is partaking in a statewide presentation to providers and individuals that are involved with children and youth with special healthcare needs. After those presentations are given, virtual or in person, a survey is sent out to gather additional questions or data from those who attended.

Over the past year, CSHCS, Indiana Family to Family, Help Me Grow, and the Indiana Complex Care Coordination Collaborative participated in the MCH Workforce Development Center’s 2023 cohort. The cohort team created a survey to distribute to organizations that offer care coordination services to understand the scope and scale of available resources throughout Indiana. The group will continue to meet to collaborate on building a stronger care coordination system that allows families and care coordinators to provide accessible and appropriate services while not duplicating services the family may already be receiving.

As a result of the cohort, members of the CSHCS team will take part in the Family Engagement in Systems Tools (FESAT) in the upcoming year. Through this tool, members of the team will be compiling data from the Children’s Health Services survey sent out in July 2023. Part of the survey involves a question regarding the Children’s team hosting a virtual meeting for those interested in collaborating and meeting individuals across the state of Indiana that provide services to children and youth with special healthcare needs. After that meeting, a second survey will be sent out with more in depth questions in order to better understand the services provided and who they provide services to in various counties.

Genomics and Newborn Screening (GNBS)

The Children Special Healthcare Services (CSHCS) and Genomics and Newborn Screening (GNBS) programs are collaborating to improve the coordination of care among individuals living with sickle cell disease and sickle cell trait. For the first time ever, CSHCS and GNBS released a joint funding opportunity, which will help partners streamline their work into one application and work collaboratively to improve sickle cell detection and follow up plans. The team will be defining performance metrics with the awardees of this new grant opportunity to ensure comprehensive services which includes medical, social, and educational services are provided to individuals living with sickle cell disease or trait across the lifespan. We aim to improve the statewide system of coordinated specialized hematology care, address the high rate of lost to follow-up cases from newborn screening, improve transition services from pediatric to adult care, expand education to primary care and emergency room providers, ad other unaddressed needs and gaps that exist among the Hoosier sickle cell community.

Additionally, the GNBS program plans to update patient status forms to improve data collection for short-term follow-up, referrals to services, and lost to follow-up. The newborn screening program wants to understand the barriers to follow-up. In order to better understand those barriers, we plan to add data fields to the current patient status forms. These forms are required to be submitted to the newborn screening program by our funded care coordination partners for any newborn referred to their clinic. The newborn screening program will analyze this data and make program improvements to better support families throughout the short-term follow-up process from abnormal screening results through confirmatory testing. The funded care coordination partners are also required to refer newborns diagnosed with a newborn screening condition to First Steps, Indiana’s early intervention services.

Early Hearing Detection and Intervention (EHDI)

In the next year, Indiana EHDI is coordinating with state stakeholders and organizations that serve DHH children to improve provider collaboration and communication between physicians, audiologists, early intervention specialists and school- based personnel. The goal is to develop a standard care coordination model for deaf and hard of hearing children in order to maximize outcomes.

EHDI is also revising tool kit materials being sent to primary care physicians for children in their practice who have been newly diagnosed with permanent hearing loss. Tool kits will be based on specific types of hearing loss. The goal is to improve education to providers about best practice for medical home procedures for those children. Materials have been developed with resources from the American Academy of Pediatrics EHDI program.

EHDI also plans to collaborate directly with Indiana First Steps to develop care coordination models for children with normal hearing, but speech and language delays to include hearing tests and for different types of permanent hearing loss. The goal is to improve First Steps service coordinators in best practice procedures for these children.

State Priority Need:

Access to High-quality, family-centered, trusted care is available to all Hoosiers.

National Performance Measure (2020 - 2025):

NPM 12: Percent of adolescents with and without special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care.

Evidence Based/Informed Strategy Measure (2020 - 2025):

ESM12: Number of adult and pediatric providers who have received training in transition services and caring for CYSHCN.

ESM12.2: Number of participants in Center for Youth and Adults with Conditions of Childhood (CYACC) clinical services.

The CSHCS division partners with the Center for Youth and Adults with Conditions of Childhood (CYACC) clinic and Foster Success to ensure that adolescents with and without special healthcare services receive services necessary to make their transition to adult health care.

The Center for Young Adults with Conditions of Childhood helps youth ages 11 to 22 with chronic health conditions move from seeing pediatric physicians to adult care physicians. Special healthcare needs may include:

• Chronic health conditions
• Intellectual disabilities
• Physical disabilities
• Chronic mental illness

CYACC offers consultation and training to help youth and their families. The transition process should start early, be gradual, and involve small steps to achieve the long-term goal of successful adult self-management. The CYACC team supports families as they progressively give their children more responsibility.

Youth learn to move from the protective setting of pediatric care to more independent self-management found in the adult care system. Parents learn to serve as ongoing and important members of their child’s adult support system. CYACC prepares young adults to properly transfer their health information to new adult providers and develop trusting relationships with their new healthcare teams.

There are some youths with neurocognitive disabilities who may not achieve full self-sufficiency as adults. They retain a need for significant support from their caregivers. CYACC assists these youth and their families to adapt to the adult model of care for their needs.

The CSHCS Division will continue to fund CYACC in the coming application year. CYACC is currently housed in a clinic with Ezkenazi hospital. CYACC goals for the upcoming year will include creating stronger partnerships statewide, continuing to train medical professionals, improve telehealth services, and create a standardized approach to mental health screenings.

CYACC will continue to partner with Foster Success to share and collaborate on strategies about transition. Foster Success has an active youth advisory board that will be consulted about various topics that could help serve Hoosier CYSHCN more effectively. CYACC in return will provide training to staff at Foster Success to help them further their understanding of how to better serve youth with special healthcare needs.  In addition, Foster Success will refer youth with special health care needs to the CYACC clinic as appropriate while also serving on the CYACC advisory board.

CSHCS will continue to partner with youth-serving agencies such as the Indiana Youth Services Association, Voices, CYACC, Indiana Family to Family, Foster Success, and other state agencies to promote youth leadership, which will increase our ability to understand current challenges around transition and improve our ability to work in this space.

Foster Success is a state-wide organization for youth that have been in the foster care system for at least one day. During the application year, Foster Success will promote health lockers to participants in their programs. The health lockers will hold social security information, health information, and other documents that will help youth transition out of the foster care system. Foster Success has a youth advisory board that is creating a strategy for promoting this opportunity. In addition, Foster Success is holding sessions with youth about how to transition to adult health insurance, education opportunities, and adult decision making. Youth participating in programs are compensated for their time.

CSHCS participates in the statewide Transition Advisory Council. This group is comprised of local and state partners that provide services to transition age youth that require education, emotional, or physical support. The group provides resources for their organization, presents relevant updates, and invites group members to develop plans around current challenges.  

State Priority Need:

Access to High-quality, family-centered, trusted care is available to all Hoosiers.

State Performance Measure (2020 - 2025): Application Year (10/1/2023-9/30/2024)

SPM 5: Promotion of optimal health, development, and well-being

Indiana’s Title V Needs Assessment data revealed that there is a significant need to address the health, development, and well-being around multiple areas for all children, including children with special health care needs. CSHCS and MCH plan to continue to implement programs that aid in the promotion of health for this population.

Genetics and Newborn Screening

The Genomics and Newborn Screening (GNBS) program comprised of the heel stick screen, critical congenital heart disease screen, metabolic formula coverage, and birth defects surveillance and prevention will continue to attend community events such as community baby showers and health fairs to speak with families about newborn screening and folic acid. The GNBS program receives event information from the Community Outreach and Education Supervisor of MCH MOMs Helpline and collaborates with EHDI to ensure participation in events across the state.

The Indiana Birth Defects and Problems Registry (IBDPR) was awarded funding to collaborate in the Center for Disease Control and Prevention Autism and Developmental Disabilities Monitoring (ADDM) Network. Indiana is expanding its current surveillance of autism spectrum disorder by adding additional data sources for surveillance such as Medicaid and Department of Education data to ensure compliance with ADDM Network guidelines. The IBDPR team will be responsible for submitting data to CDC in July 2024. Reports and community outreach from this data are planned as well. Additional collaboration between Help Me Grow, GNBS, EHDI, and CSHCS is planned to coordinate improvements with developmental screening across the state. This will further support the work of the ADDM network as well.

Additionally, the newborn program plans to increase prenatal education regarding newborn screening. Studies show that receiving newborn screening information during the prenatal period is better retained than at the time of delivery or shortly after delivery. The newborn screening program is working with Expecting Health to provide materials to prenatal educators, obstetrics and gynecology offices, Women, Infant, and Children (WIC) offices, and churches. The newborn screening program plans to pilot the prenatal education in one hospital first and develop performance metrics for evaluation to ensure families are retaining the information. The Community Health Clinic in Topeka, Indiana, has already piloted in the Amish community they serve. It was shown to be successful, and the Community Health Clinic plans to continue the education.

Early Hearing Detection and Intervention

Indiana EHDI supports the ASTra program, which is a Hands and Voices educational advocacy service available for parents of deaf and hard of hearing children. The ASTra advocates are all parents of deaf and hard of hearing children who are highly trained in education law. They are available to parents of school age deaf and hard of hearing children to assist parents in educational planning, Individualized Education Plan (IEP) equity@amchp.org meetings and transition out of high school.

Children with Special Health Care Services

CSHCS is working to meet children, youth, and families where they are at within their own communities and within programs and services that they currently utilize. CSHCS will continue to partner with Indiana Family to Family, CMC project, ACEs initiative, Foster Success, and CYACC to ensure that health promotional materials are provided to all that participate in their programs.

CSHCS will continue to meet with the MCH team and other stakeholders as IDOH works to utilize the Blueprint for Change. It is critical that the team works with the American Academy of Pediatrics for technical assistance to align our work with this plan.

CSHCS is participating in a NASHP collaborative on promoting developmental screening in collaboration with Part C and Medicaid. Partners have created a steering committee who oversees the work from multiple disciples in early childhood. The group created a survey that we will distribute to all partners that work in early childhood. This work will demonstrate current activities, knowledge, and utilization around developmental screening. All early childhood efforts will work together to increase and improve efforts around developmental screening including Help Me Grow Indiana as they work to expand and utilize the MCH Helpline call center to connect families to referrals and systems of care.

Expansion of local Help Me Grow

In the coming year, Help Me Grow will continue to seek out ways to expand to new areas of the state. In the spring of 2023, an organization in Porter County, First Things First, began a community-based collaborative to seek out ways to improve child health within their jurisdiction. The collaborative landed on system project which seeks to connect families to developmental screens, and as appropriate to specialists. MCH was able to partner with First Things First and connect the state Help Me Grow Model to their desired local model. Porter County is announcing the launch of Help me Grow within their closed system in the fall of 2023 and MCH and CSHCS look forward to continued collaboration.

Indiana ACES Coalition

The ACEs Indiana Coalition has several goals for the upcoming grant year. With over 200 Master Trainers now in the state of Indiana, they first plan to continue spreading the ACE Interface education to organizations and communities. Data will continue to be collected on educational results from the ACE Interface presentation. As well as, total presentation numbers, website traffic, and coalition communication. With this funding they can continue to update our presentations with the leading research in the field. This has allowed them to build education that interrupts harmful practices in the state. To continue to be leaders in this education, important partnerships must be built and sustained. One example is Self-Healing Communities of Greater Michiana. With this funding they plan to continue to use them as consultants. This will further assist the coalition in building important family, organization, and community resources. In addition, they plan to collaborate with Self-Healing Communities to plan the ACEs Indiana Coalition conference. This conference will be focused on caring for our Master Trainers. Titled “Rediscovering Resilience,” this conference will emphasis the importance of moving this work past education to building a self-healing/trauma-informed community. As well as how they foster their own resilience to continue this work with others. This conference will assist them in expanding Master Trainers dedication and interest in this work and growing those important partnerships across the state. Finally, with this funding they plan to continue to train additional Master Trainers. With a waitlist already building for 2024 the interest in becoming an ACEs Indiana Coalition Master Trainer is only continuing to grow. This funding is essential for the accomplishment of these goals, and the implementation of further education, research, and growth with this work in the state of Indiana.

Partnership with Department of Education

The CSHCS and MCH team have been in collaboration with the Department of Education (DOE) on a project related to kindergarten readiness. It is the vision of DOE to create a unified child number at birth, then use that number to better understand what services families are using up to entry into the public education system. Examples of these data could include First Steps, home visiting, hearing detection follow-up, immunizations, and more. Ideally, relevant staff at different levels of the school, system, and state government will be able to access information regarding children enrolled in school to best support children and families.