III.E.2.c. Children with Special Health Care Needs: Application Year (10/1/2022-9/30/2023)

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.

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

The Children with Special Health Care Services (CSHCS) Division provides care coordination to CSHCS program participants and any Hoosier family that has a child/youth with a special healthcare need. The Care Coordinators assess the families’ needs and make appropriate referrals to community-based services, medical services, and other identified service areas. The CSHCS division plans to expand their current strategy by:

• Partnering and networking with care coordinators state-wide to avoid duplication of services. CSHCS has identified several networking opportunities throughout the state that will help with this effort.
• Care Coordinators are being trained in the various systems that our participants may be enrolled in.  This includes, but is not limited to First Steps, K-12, school health, Medicaid, Indiana Family to Family, etc.
• The CSHCS has hired two care coordinators that are parents of children with special healthcare needs. 
• Partnering with the expanded Health Care Delivery System Innovations for Children with Medical Complexity CoIIN that is expanding due to funding from Medicaid.  Nurse care coordinators embedded within primary care offices will connect families to complex medical care homes when appropriate and ensure that patient charts are up to date.  An advisory board consisting of Medicaid, CSHCS, CMC project, caregivers, and Family to Family organizations will meet bi-weekly to ensure that the project is utilizing all systems.
• The CSHCS integrated community service manager and the care coordination manager will create a strategic plan in partnership with Title V grantees. The following Title V grantees that will be included:  Indiana Family to Family, Complex Medical Home Expansion Project, and The Center for Youth & Adults with Conditions of Childhood (CYACC).

Over the past five years, Indiana has developed a program to embed nurse care coordinators into three primary care offices to ensure that pediatric complex medical care patients are being provided quality care. The primary care offices are in urban, semi-urban, and rural locations. Each location was required to have 100 participants enrolled in the program. The project developed a shared plan of care that ensures that the family can share what is important to them, as well as detailed information about their child’s care. Medicaid has agreed to fund expansion of this project through 2025. In partnership with Indiana Medicaid, CSHCS will expand the current complex medical care project statewide. The project goals will include creating a network of social workers that can come along side of the embedded nurse care coordinators to best meet family needs. The project will also embed staff from our statewide family organization. CSHCS recognizes that families/caregivers learn best from others who have been through similar experiences. Funding will help develop best practices within local communities to support families/caregivers. Currently, local Parent Cafés are being utilized to help with caregiver leadership and support. However, the project is leveraging Indiana Family to Family’s ability to provide parent cafes specifically for caregivers of complex medical care children and youth. 

The CSHCS Division will continue to work with the Indiana Department of Health Maternal and Child Health (MCH) Division on the spread of Help Me Grow (HMG) across the state. The collaboration between HMG, MOMS Helpline, CSHCS Care Coordination Section, Title V and state care coordination will be beneficial in creating a comprehensive system of coordination for all families with and without special health care needs in the state. This will include continuing conversations to create a plan with Indiana First Steps (Part C) to create a more comprehensive and coordinated early intervention system.

The Genomics and Newborn Screening (GNBS) program will continue to partner with specialists for infants who screen presumptive positive for any heel stick condition. Care coordination partners are funded through the newborn screening fee and are required to coordinate confirmatory testing and care, if applicable, for these infants. This care coordination ensures the timely referral to specialists for appropriate care and treatment.

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.

A smooth transition sets the path for a better future for youth and their families. The teen years can be a vulnerable time, including urges to try risky activities. Youth need their families through this time, and parents need the skills to support and educate their children.

Youth with health conditions may have trouble following their treatment plans or navigating the health system on their own. Self-management and decision-making skills are needed for a healthy adult life. Parents may need to step back as managers of their child's needs. They can let their child grow and learn new skills while still providing safe support.

CYACC 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 the 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 partnerships statewide, continue training medical professionals, improve telehealth, 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 it serve Hoosier CYSHCN more effectively. CYACC in return will provide trainings 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 will 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 program are compensated for their time.

State Priority Need:

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

State Performance Measure (2020 - 2025): Application Year (10/1/2022-9/30/2023)

SPM 5: Promotion of optimal health, development, and well-being [FA1]

MCH Helpline:

The MCH Helpline has a unique system of resources that promote the optimal health of Indiana families. The MCH Helpline is comprised of three interconnected systems: My Health Baby, a program that provides prenatal care information and home visiting services for pregnant mothers; Help Me Grow, a developmental screening and referral system that provides free developmental screenings for children and resources to families and early childhood development providers; and MOMS Helpline, an information and referral service tailored to provide both basic need resources for families, as well as resources for mothers and babies. The MCH Helpline would like to extend its reach in Indiana through cohesive branding and evolved collaborations with current early learning partners.

The MCH Helpline would like to extend its connection with Maternal & Child Health by continuing to pass out promotional items from the Helpline, along with promotional items from other MCH programs, according to the event. The MCH Helpline’s Community Outreach team attends several community events, conferences, expos and baby showers in Indiana. Their attendance can be accompanied with the full presence of MCH promotional items.

This extended outreach can lead to the production of a cohesive Maternal and Child Health branding and logo for Indiana. The MCH Helpline will be able to create promotional materials that are specifically for Indiana Maternal and Child Health. These materials will include an inclusive MCH brochure, event take aways, and event branding materials. Creating an inclusive design and message for MCH provides a comprehensive overview of Indiana’s MCH system, while increasing collaboration with the MCH division and IDOH.

While working on internal collaboration, the MCH Helpline, would also like to evolve its external collaboration with early childhood partners and Help Me Grow (HMG) Indiana. Specifically focusing on the Department of Child Services (DCS) and Indiana First Steps; HMG Indiana can serve as a conduit for developmental screenings. These screenings would specifically be for children in the Indiana First Steps age range (0-3) that are referred by a DCS case manager. These children can be referred to HMG by DCS for initial screening to determine if they have a developmental delay through the Ages and Stages -3 Developmental Screening tool. The results can be reported back to DCS, through an Application Programming Interface (API) that can be established between both state agencies. If the child’s screening results in a developmental delay, that information can be sent to Indiana First Steps for further assessment. This screening tool that HMG can provide can mitigate wait time for First Steps enrollment and improve developmental assessments for Indiana Children.  

The MCH Helpline will continue to work through its call center and community outreach to promote optimal health for Indiana’s families. In the future, it will advance that work through improved branding and collaboration.

Genomics and Newborn Screening:

The Genomics and Newborn Screening (GNBS) consists of the heel stick screen, critical congenital heart disease screen, and birth defects surveillance through the Indiana Birth Defects and Problems Registry (IBDPR). The GNBS program plans to design and print promotional items to increase awareness of the program. The GNBS program will attend several community events, such as community baby showers and parent café events, where the promotional items will be distributed. In addition to the promotional items, the GNBS program will continue to distribute the heel stick and critical congenital heart disease handouts at community events as well. These handouts describe the two screens and their importance. The GNBS program plans to update the “After Newborn Screening” brochure which every family receives after delivery to explain dried blood spot storage. By updating the brochure to include information on the benefits of storage for individuals and the program, the GNBS program hopes to improve the consent rate for storage of dried blood spots.

The GNBS program will continue visiting each birthing facility to provide education to the nursing staff and leadership regarding newborn screening. The main purpose of onsite visits is to ensure newborn screening mandates are met while maintaining timely and accurate screening at all birthing facilities. With 85 delivering hospitals and five licensed birth centers, the goal is to complete an onsite visit at least once every couple of years.

The GNBS program in collaboration with CHSCS plans to streamline metabolic formula coverage. Both programs currently cover the cost of metabolic formula. The GNBS program currently grants funds out to two partners in the state who are responsible for prescribing and obtaining formula through the guidelines of the GNBS program. The CSHCS currently covers the eligible claims for metabolic formula. Eligibility criteria for CSHSC and program guidelines for metabolic formula coverage through the GNBS program often leave families confused. We plan to hire a metabolic formula coordinator who will be responsible for the program at the health department.

The GNBS program will continue to promote the six online trainings for all newborn screening partners across Indiana. The trainings include information regarding the state mandates, best practices, and reporting requirements for newborn screening in Indiana. The GNBS program will add and update trainings as needed for continuous education. The program intends to add trainings regarding the state mandates for reporting to the IBDPR as well as a folic acid course to increase folic acid intake and reduce neural tube defect rates across the state.

Folic acid awareness is a priority for the IBDPR program. There is a disparity among neural tube defect rates with the Hispanic population in Indiana. The IBDPR program plans to launch a folic acid awareness campaign. Two educational materials will be distributed to clients of community organizations and partners across Indiana to increase awareness of folic acid. The educational materials are double-sided with English and Spanish. We hope to launch in at least two counties and expand into the remaining counties as partnerships are identified.

The Adverse Childhood Experience Indiana Coalition:

The ACE Indiana Coalition currently has 100 individuals trained throughout Indiana. The goal of the coalition in the coming year is to create a online data system to track the trainings and resources provided. The coalition is also piloting a project in a high school to promote resilience among high school youth. The pilot project provides trainings, a mentor, and resources. The coalition’s goal is to promote this model in other communities.

MCH and CSHCS staff are engaged in several child and youth collaboratives. The goal is to increase our ability as a state to effectively ensure that children and youth can achieve optimal health so that they have the knowledge about how to navigate the systems that the state currently has in place. A 0-21 state program spreadsheet has been developed that is being adapted for providers and caregivers. In the coming year, this spreadsheet will become more user friendly. The collaborative is also working to look at workforce among the programs that serve children and youth. The collaboration allows state entities to not only discuss issues but also serves as an opportunity to know what funds are available and how to utilize them more effectively.

CSHCS, Indiana Family to Family, and the LEND (Leadership Education in Neurodevelopmental Disabilities) Program collaborated on a project to compile findings from all recent needs assessments from across the state that ask questions about children, youth, and families. This information will be shared with Title V and other state entities to ensure that we are comprehensively assessing how we can promote optimal health information. 

Oral Health:

In late 2021, the State’s Oral Health Director and his team retired, however in summer of 2022 the Department of Health onboarded a new Oral Health director. Neither MCH nor CSHCS has the in-house expertise independent of the Oral Health Program and while Title V has two current grantees working on oral health projects, the program is excited to partner with the new division to understand how to best provide support. Access to oral healthcare is a recurring theme in nearly all population health domains in the 2020 Needs Assessment.

MCH secured funding from Delta Dental to pilot oral health practice agreements to place hygienists in an OB office. MCH looks forward to seeing how the project progresses. MCH also secured materials from Delta Dental for the outreach specialists to distribute to community members at external events.

[FA1]1700 Materials given out (HMG, Learn the signs act early, My Healthy Baby); 162 ASQ Screenings completed; 489 providers completed GNBS trainings; EHDI Trainings: 225; EHDI Materials sent: 3600; 638 ACES presentations