II.E.2.c. Children with Special Health Care Needs: Annual Report

 FY20 10/1/2019 - 09/30/2020

National Performance Measure 11 (2016-2021):
Percent of Children with and without special health care needs having a medical home.

Care coordination continued to be a focus of the Children’s Special Health Care Services (CSHCS) Division. CSHCS funded six Title V projects with an emphasis focused on statewide care coordination, in medical clinics, school-based clinics, and family and parent led organizations. Activities focused around family engagement and empowerment, system navigation, education, and referral to available community-based resources. The entities were funded through the Title V CSHCS Division:

• About Special Kids     
• Autism Society of Indiana
• Center for Youth and Adults with Conditions of Childhood
• Open Door Community Alliance, Inc.
• School City of East Chicago
• Indiana University Spina Bifida Program at Riley Hospital

The CSHCS Division’s Care Coordination Section provided coordination to CSHCS program participants and all CYSHCN statewide. The Care Coordinators assessed the families’ needs and made appropriate referrals to community-based services, medical services, and other identified service areas for medical and non-medical needs. A care coordination module (CCM) was implemented to log cases efficiently and track referrals. It was built within our current Agency Claims Administration and Processing System (ACAPS).

The State Implementation Grant for Enhancing the System of Services for Children and Youth with Special Health Care Needs (CYSHCN) through Systems Integration grant through HRSA allowed us to work closely with the Indiana University School of Medicine’s Neurodevelopmental Behavioral Services Early Evaluation hubs across the state to implement place-based care coordination. In partnership with Family Voices of Indiana, care coordination videos were added to the Family Voices webpage.  This series of short, informative videos explains care coordination, shared plans of care, and setting care coordination goals. Effective care coordination can positively impact patient experiences and improve care outcomes. Care Coordination tracks for providers, families, and medical providers were added at statewide conferences. The conferences were The Institute for Strengthening Families, Family Voices, and the Riley Pediatric Conference. 

National Performance Measure-12 (2016-2021):
Percent of adolescents with and without special health care needs who received services necessary to make transitions to adult health care.

The Center for Youth and Adults with Conditions of Childhood (CYACC) provided transitional care to youth and young adults with special health care needs in Indiana. They are  funded through the Title V program and overseen by the CSHCS Division at ISDH. The Center trained IU School of Medicine medical residents across the state on the transition process and caring for those with special needs. 

Families were educated on the topic of transition during the care coordination process and trainings were available for families through the family/parent organizations.

Open Door provided eligible students with and without special health care needs trainings and services that helped them as they transitioned out of high school. They formed partnerships with TRIO, MCHS Guidance Department, La Porte County Covering Kids and Families, Purdue Extension, HealthLinc, and Michigan City Promise Scholarship.

CSHCS division participates in the Transition Council. The purpose is to bring together a diverse group of stakeholders who are concerned about and involved in transition activities for high school students throughout the state. This group will provide advice and guidance to Vocational Rehabilitation as well as other stakeholders to ensure that we move forward in a spirit of collaboration and cooperation to assist transition aged youth in preparing for their futures.

The CYACC advisory board met three times in the calendar year with participation from young adults, families, and state organization and agencies. Each organization provides updates on any new activities. Additional collaborations occur with the children’s hospital in providing transition information on the website and family library.

State Performance Measure 4 (2016-2021):
Percent of children with and without special ages 0-21 who are screened early and continuously for special health care needs.

ECCS

The purpose of Indiana’s Early Childhood Comprehensive Systems Impact (IN ECCS Impact) is to enhance early childhood systems building and demonstrate improved outcomes in population-based children’s developmental health and family well-being using a Collaborative Innovation and Improvement Network (CoIIN) approach. Through the ECCS grant, we hope to connect Indy East Promise Zone children, ages 0-8, and their families to care coordination, child developmental screening, and screening for maternal depression in order to support early detection, referral and intervention with the goal of demonstrating a 25% increase from baseline in age appropriate developmental skills among the community’s 3 year old children within 60 months.

The Indiana Home Visiting Advisory Board (INHVAB) was created to engage early childhood agencies to leverage and share knowledge and expertise. INHVAB serves as the ECCS, Maternal, Infant, and Early Childhood Home Visiting (MIECHV) and Help Me Grow (HMG) state team for Indiana. INHVAB members meets quarterly to present initiatives and share information/resources about Indiana’s home visiting/early childhood initiatives. During 2020, the team has created a mission, vision and goal statement for the advisory board. The vision of INHVAB is that children and families in Indiana would be prioritized and holistically supported, through access to care and education, so they have all that they need to be successful. The mission is to maximize opportunities for children and families by fostering collaboration, sharing resources, partnering on opportunities, advising on implementation, and supporting sustainability.

INHVAB continued to hold quarterly state meetings to engage early childhood stakeholders and has hired a facilitator to help manage meetings, take notes and manage communication. INHVAB members developed a two-page FAQ document for new members, which included the vision, mission and goal statements. The entire state team developed these documents. The state team also spent time working on a family engagement job description/expectations for family engagement within state and local boards. 

IDOH continued receiving Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) data from Medicaid. The place-based community (PBC) and the state team participated in a Family Engagement in Systems Assessment Tool (FESAT) TA opportunity to access how to effectively engage families within our systems building work.

Through this grant, ECCS and Help Me Grow (HMG) has been able to collaborate with several partners and embed our work within other grants including the AUCD; support of early childhood systems through the act early network to support recovery and strengthen resilience skills, behaviors, and resources of children, families and communities; and working with our physicians on the Addressing Social Health and Early childhood Wellness (ASHEW) grant.

Indiana also participated in AMCHP’s Early Childhood Collaborative Systems Building initiative which included Title V and MIECHV partners. Through the collaborative, AMCHP developed The Early Childhood Roadmap. The roadmap was created to be a resource to help understand the dynamics of Title V, ECCS, and MIECHV and how these three programs collaborate.  The Roadmap was shared with the Indiana’s ECCS state team during the ECCS virtual learning session.

Through COVID, our Place Based community (PBC) was able to continue training and parent cafes virtually. Our PBC began Books, Balls, and Blocks® events both in-person and virtually due to Covid-19. During this time frame, there was staff turnover within our PBC, which led to retraining staff.

Both the state and local teams began using tools provided from our national partners to work on what pieces we would sustain and working with our partners to determine roles and responsibilities around sustainability.

• Our CDC ambassador continues to provide ASQ trainings to our partners, including early childhood librarians, WIC staff and state partners.
• Help Me Grow continues to grow and have a positive impact in our Indiana communities. Due to COVID, expansion was put on hold but are looking to expand to more counties in 2021. HMG staff participated and had access to training modules around early childhood systems work. The HMG annual conference was going to be held in Indianapolis but was postponed due to Covid-19. Indiana will be hosting a virtual conference in the fall of 2021. Indiana continues to partner with IN211 which has shifted from a non-for-profit to residing within another state agency.
• A standard operating procedure manual and resource manual as our section continues to grow. The data system that is used within IDOH has been built out and improved since the inception. This helps IDOH collect and report on the data. The Indiana team developed an online referral form and has sent this out to providers and families to become connected to the ASQ and our HMG specialists.

The Genomics and Newborn Screening program continued to rapidly detect disease and connect families with appropriate resources through the Indiana Birth Defects and Problems Registry as well as through targeted newborn screening of Pediatric Endocrine Disorders, Inborn Errors of Metabolism, Hemoglobinopathies, Cystic Fibrosis, Critical Congenital Heart Defects, Severe Combined Immunodeficiency, Spinal Muscular Atrophy, Krabbe disease, Pompe disease, MPS1, and Hearing loss. Newborns positive for disease are connected with services for specialized physician care and therapies, medical management, genetic counseling, community resources, educational resources, and others as appropriate.

Services are provided by newborn screening-funded community partners who specialize in specific diseases and provide medical care as well as social services to address healthcare barriers. These partners include:

• Indiana University School of Medicine Cystic Fibrosis Center
• The Community Health Clinic
• Indiana Hemophilia and Thrombosis Center
• Riley Hospital for Children

Each serves families statewide to provide clinical laboratory testing, identify medical needs, establish individualized care plans, and navigate healthcare barriers.