III.E.2.c. Children with Special Health Care Needs: Annual Report (10/1/2021-9/30/2022)

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.

The Children with Special Health Care Services (CSHCS) Division provides care coordination to program participants and any Hoosier family that has a child or youth with special healthcare needs. The CSHCS Care Coordinators assess the families’ needs and make appropriate referrals to community-based services, medical services, and other identified service areas. The care coordination section has served 1,675 existing participants, which include new enrollment and re-evaluation cases.

The CSHCS division partnered in the following ways:

• Participating in an MCH Workforce Development with partner agencies to improve communication and effectiveness around care coordination.
• The Health Care Delivery System Innovations for Children with Medical Complexity CoIIN ended, however Medicaid and Title V have partnered to create a path to expansion.  
• Met with Indiana Family to Family regularly to strengthen relationship and referrals.
• Resources that were utilized by families more frequently were put into a system so that care coordinators within the care coordination section could have easier access. Some of these include grant sites that families with qualifying disabilities could apply for, camps for disabilities, funding resources, autism resources, DME resources, grieving resources, and parent/sibling support.

The CSHCS Division continue to work with the Indiana Department of Health Maternal and Child Health (MCH) Division on expanding the Help Me Grow (HMG) system across the state. The collaboration between HMG, MOMS Helpline, the CSHCS Care Coordination Section, and Title V 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.

Genomics and Newborn Screening

The Genomics and Newborn Screening Program is comprised of the newborn screening program (dried blood spot and critical congenital heart disease screening) as well as birth defects surveillance and prevention for the state through the Indiana Birth Defects and Problems Registry. The newborn screening program funds care coordination groups across the state to ensure coordination of confirmatory testing, care coordination, treatment, metabolic nutritional services, and genetic counseling when appropriate. The care coordination groups typically consist of a geneticist or pediatric specialist, genetic counselor, newborn screening follow-up coordinator, and nutritionist if appropriate.

• Riley Children’s Hospital located in Indianapolis is home to two of the six groups. This includes the endocrine and cystic fibrosis clinics.
• The Medical and Molecular Genetics Department of the Indiana University School of Medicine in collaboration with Riley Children’s Hospital coordinates care for inborn errors of metabolism, severe combined immunodeficiency (SCID), spinal muscular atrophy (SMA), galactosemia, biotinidase deficiency, Krabbe, Pompe, MPS-I, and adrenoleukodystrophy.
• The Community Health Clinic provides care coordination services for 19 counties in northern Indiana for inborn errors of metabolism, SCID, SMA, galactosemia, biotinidase deficiency, and adrenoleukodystrophy. They have a strong rapport with the Plain communities across Indiana. Collaboration with the Community Health Clinic has allowed for increased participation in newborn screening among the Plain community.
• Parkview Health in the northeastern part of Indiana and the Indiana Hemophilia and Thrombosis Center (IHTC) also receive funding as care coordination groups. Parkview Health is the second partner for cystic fibrosis and endocrine care coordination.

The newborn screening program continues to monitor the services provided to infants and families through the patient status forms created by the program in 2021.Care coordination partners are required to submit a patient status form for all infants referred to their clinic. These forms provided the newborn screening program with updates on confirmatory testing, treatment and care, and referrals to early intervention.

The newborn screening program held webinars with the care coordination partners and a representative from First Steps, which is Indiana’s early intervention program. During these webinars, First Steps provided detailed information on how physicians or other support staff can refer any individual with a newborn screening condition to First Steps. Infants are eligible simply based on their diagnosis from newborn screening. If the child is not currently experiencing a developmental delay, the family will be provided information on their rights, the child’s current developmental level, community services, and contact information for the system should they have concerns in the future. After these webinars, the newborn screening program asked all care coordination partners to refer patients to First Steps. For this reporting period, 18 infants with a diagnosis from the dried blood spot screen received a referral to First Steps.

Early Hearing and Detection and Intervention Program (EHDI)  

Indiana’s EHDI team provided technical assistance and training to birthing hospitals, healthcare providers, and parents to meet the federal and state mandated goals of “1-3-6.” The EHDI “1-3-6” goals were mandated in 2000 by the Joint Commission on Infant Hearing and American Academy of Pediatrics and ensure the following: all babies born in Indiana receive a newborn hearing screening by “1” month of age, if they do not pass newborn hearing screening, they receive a diagnostic audiology exam by “3” months of age, and if identified as deaf or hard of hearing, are enrolled in early intervention by “6” months of age.  

In order to comply with these requirements, Indiana EHDI is responsible for collecting hearing screening results on approximately 80,000 children born annually in Indiana. This includes providing onsite monitoring and training to all 85 birthing hospitals by our regional audiology staff. In addition, when a new birthing hospital staff member is identified for reporting newborn hearing screening results, Indiana EHDI trains them: approximately 40 staff members annually. Technical support includes staff working on 14,000 child files per year through phone calls and emails providing guidance to healthcare providers, parents and other programs and entities to ensure “1-3-6” goals.  

If a baby does not pass the newborn hearing screening (3600 babies annually), our staff is responsible for ensuring that those babies receive diagnostic audiology testing by 3 months of age. The follow up procedures for children who do not pass newborn hearing screening for those 3600 children include phone calls to parents and sending letters to parents and physicians with several resources: including information on Help me Grow, MOMS Help Line, Safe Sleep, frequently asked questions about newborn hearing screening and developmental milestones (in Spanish and English). These efforts continue several times until a child’s first birthday or until diagnostic audiology results are entered in our system.  

If a child is identified as deaf or hard of hearing, we provide education (230 children per year identified with congenital hearing loss by age one) to the child’s parents and physician through a tool kit that includes state and local resources and guidance for best practice services for deaf and hard of hearing children. We also provide one year of parent-to parent support for any family with a newly identified deaf or hard of hearing child (any age of diagnosis). This parent to-parent support is provided through a program called Guide by Your Side program and is a collaboration between Indiana EHDI and Indiana Hands and Voices. Each family is assigned to a parent guide who can provide support to the family after identification of permanent hearing loss through enrollment into early intervention services. In order to provide additional parent support after early intervention, EHDI now offers the ASTra program, which is primarily funded by Title V.  

ASTra is a Deaf and Hard of Hearing Educational Advocacy Program that embodies the mission and vision of Hands & Voices, which is to provide support to families with children who are deaf or hard of hearing (D/HH) without a bias around communication models, methods, and educational settings so that every D/HH child has the opportunity to achieve their full potential. ASTra content is derived from years of direct advocacy experience working with families in schools, attending advocacy trainings from legal experts, providing trainings, and the Hands & Voices Advocacy Guidebook. Indiana is the 12th State to attain the ASTra Program Certification. ASTra advocates are parents of deaf and hard of hearing children who have been highly trained in the education law and parent rights and can help families navigate the individual educational plan process. This is important for deaf and hard of hearing children to ensure adequate access to classroom and social interactions and academic accommodations are in place to support academic progress. During the first year of this program (2019-2020) we served, trained, and provided six Certified Astar Advocates with specialties in ASD, twins, Progressive Loss and native Spanish speaking. The program expanded from serving 47 families from 2020-2021 to 111 families from 2021 to 2022. Of the 111 families served, 40 were Hispanic, 13 Black/African American, 54 Caucasian and 2 Asian.  The families served had D/HH children between the ages of two-and-a-half years old to 16 years old. Of the 111 families served, 45 families use a different language than English.  

EHDI has initiated several collaborations with internal and external stakeholders to improve outcomes for deaf and hard of hearing children. It is well known that 3/1,000 children are identified with congenital hearing loss through mandated newborn hearing screening efforts. It is also known that an additional 3/1,000 children are identified with permanent hearing loss after the age of one.  EHDI has been tasked by CDC and HRSA to expand the education and collection of hearing screenings through age five. To accomplish this goal, the EHDI team has expanded their collaboration efforts with early childhood partners including Head Start and the Part C First Steps program, to identify ways to improve education to stakeholders on the importance of hearing screenings.  

We have improved our partnership with the Genomics Newborn Screening program by providing guidance and live webinars for birthing hospitals, audiologists, and other healthcare providers regarding guidance for newborn screening procedures and follow up. We have identified several opportunities to exhibit at conferences such as the School Health Conference, WIC, Public Health Nurses, Physician conferences, First STeps and others to improve education about newborn screening and follow up. 

We also collaborate with other stakeholders through an EHDI Advisory Committee that includes representatives parent organizations, Head Start, WIC, Center for Deaf and Hard of Hearing Education, Audiologists, physicians, nurses, parents, early intervention providers and parents. The Director of EHDI also participates in the Advisory Committee for the Center for Deaf and Hard of Hearing Education and the Indiana Perinatal Quality Improvement Collaborative Perinatal Genetics and Genomics committee for the Genomics Newborn Screening Program and on the MCH Lead team.  

Indiana Early Childhood Collaborative

IDOH MCH continued to hold quarterly meetings with the Indiana Early Childhood Collaborative, formally known as the Indiana Home Visiting Advisory Board, Early Childhood Comprehensive Systems Building, and Help Me Grow (INECC/ECCS/HMG). The purpose of this group was to bring local and state stakeholders together around systems building within the early childhood sphere, including CSHCS, using this group to make recommendations, collaboration and enhance the system for families.

This group pulled together a working group to create a consolidated list of recommendations/findings from across recent needs assessments. This group was used to enhance our training for families and providers, develop educational materials for families and providers and come up with shared definitions for monitoring, screening, and surveillance around development screening. MCH developed an online referral form that was being used to connect families to HMG services along with home visiting and prenatal/postpartum services. Physicians can refer clients to services and families can use this form to refer themselves for services.

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 in partnership with CYACC promoted transition services and healthcare trainings. CYACC was able to see 177 new patients and 141 returning patients ages 11-22 during the grant year from 10/21 to 9/22. They have provided just-in-time information to 249 providers. Didactic trainings were provided in the Indiana University School of Medicine community, state-wide, and nationally, reaching over 712 participants. 81 unique learners attended CYACC sessions. Training focuses on the key elements of transition, medical care recommendations for persons with medical devices and disability diagnosis categories, special education services, as well as an additional focus on recent state changes related to evaluating and determining decision making supports.  Currently the team has 0.3 FTE in clinicians, 4 FTE in care coordinators and 1 FTE staff member. One challenge within the grant year was a move to a new Federally Qualified Healthcare Center (FQHC) facility within the Eskenazi West Street facility with new utilization of the electronic health record (EHR) and reduced space in the patient care rooms which has limited the volume of learners who can participate in each clinic session. As part of our quality improvement activities within the FQHC, the team is working on better documentation of mental health screening and dietary counseling for over-and-under-weight patients within the EHR.  COVID-19 continued to impact the need for distancing with mask use which can be particularly difficult for a subset of patients with intellectual and developmental disability (IDD), and telehealth visits remain an offered option as families desired. Telehealth has significant positive impact in helping with families who have significant distances to travel with a patient who is a poor traveler or is a person somewhat intolerant of a lengthy visit in a clinical setting.  The tradeoffs are that evaluations for self-determination and performance of a physical exam are mostly impossible when using telehealth.  The team anticipates continuing to use telehealth when the benefits for families outweigh the losses.  The impact of isolation at home and short-staffing and changes related to educational settings are still notably in recovery for many youths with IDD. Waiver service providers and mental health services continue to be short staffed, and many family members continue to participate as direct service providers. Three advisory board meetings were conducted which included team members, Family to Family organizations, multiple state agencies, community service providers and caregivers of youth with special healthcare needs who engaged in active participation as stakeholders in the transition from pediatric to adult care here in Indiana.

CSHCS partnered with many youth and family organizations that serve transition age youth which included Indiana Services Association, CYACC, Indiana Family to Family, and Foster Success. Participants from the organizations have served on advisory boards for other organizations and have been consulted when other partners have questions about better serving their clients, which include youth with disabilities.

Birth Defects Program

The birth defects program applied to a cooperative agreement to enhance the surveillance of autism spectrum disorder for the state. The birth defects program has surveilled for autism spectrum disorders up to age eight since 2014.

**We have chosen to discontinue measuring ESM12.3: Percent of participants who feel empowered to make decisions effecting their health and well-being. This measure was created last year with our partners at the Center for Youth and Adults with Conditions of Childhood (CYACC). CYACC has informed us that they are unable to create this survey and commit to tracking the data over the next few years.

State Priority Need:

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

State Performance Measure (2020 - 2025):

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. MCH understand that this cannot be achieved without also engaging and meeting the needs of their caregivers. For Indiana, this extends beyond our prior SPM with a sole focus on developmental screening. Our goal behind this measure was to enhance and expand the promotion of optimal health, development, and well-being of children and their caregivers through education, awareness, and the development of common language across multiple sectors and platforms.

MCH/CSHCS began gathering the total number of trainings and materials offered to children, youth, and families who are striving for optimal health. Reaching families was a collaborative effort measured through the work of our MCH systems building, genomics and newborn screening, and Early Hearing Detection and Intervention teams, as well as the CSHCS division. MCH collected data through our MCH community outreach team. We tracked the number of resources shared, what resources were shared, how they were shared, and to whom they were shared to ensure families were getting the information on optimal health. Over the next year, we tracked the following:

• Learn the Signs Act Early (LTSAE): materials included the milestone tracker booklet, growth charts, children’s books, and development checklists for providers and families. These materials were shared at community events, with Home Visitors, First Steps, WIC providers, physicians, and families. Our LTSAE materials had specific Indiana resources listed on them.
• Developmental Screening: MCH also tracked materials distributed around developmental screening (the Ages and Stages Questionnaire (ASQ)) were shared. MCH also reported the number of screens completed.
• My Healthy Baby (MHB): With the rapid growth and expansion of MHB, materials and resources were provided to connect pregnant women to home visiting services. We measured our reach as the rollout of MHB has continued.

Genomics and Newborn Screening

The Genomics and Newborn Screening Program follows the Recommended Universal Screening Panel, and the program also developed a nomination and evaluation process in collaboration with our perinatal genetics and genomics advisory committee to allow public participation in nominating conditions to the newborn screening panel. On March 10, 2022, the governor signed House Enrolled Act 1254 into law, acknowledging the nomination process as a means for recommending new conditions to Indiana’s newborn screening panel by evaluation of the established advisory committee. 

The Indiana Health Coverage Programs, which includes Indiana Medicaid, updated policies for prenatal tests and screenings from recommendations provided by the perinatal genetics and genomics advisory committee. These updated polices included coverage for cell-free DNA prenatal screenings for aneuploidy for all pregnant women without prior authorization; removed the prior authorization requirement for carrier screening for cystic fibrosis; and added coverage for routine carrier screenings for spinal muscular atrophy and hemoglobinopathies without prior authorization.

The newborn screening program participated in the Innovations in Newborn Screening Interoperability project. The newborn screening program was provided a roadmap for implementing electronic messaging for newborn screening. Beginning stages of implementation of the roadmap have begun.

Newborn Screening Family Education

The newborn screening program continued education to families. During this report period, 1,772 materials were distributed directly to the public at community events. In September 2022, the newborn screening program joined Expecting Health’s Newborn Screening Education and Communication Workgroup with a focus on education to families.

Newborn Screening Provider Education

The newborn screening program hosted two webinars for birthing hospitals, licensed birth centers, home birth attendants, and midwives to attend. The first webinar was held in January 2022 which discussed updates to the program that occurred during the COVID-19 pandemic. There were 123 healthcare providers that attended. The second webinar was held in June 2022, and the program discussed the newly revised newborn screening program manual. These opportunities allowed healthcare providers to ask questions directly from the program staff about updated policies, best practices, and each healthcare professional’s responsibilities in the newborn screening system. Therefore, regardless of the location of birth, each newborn is accounted and screened appropriately to state guidelines.

The newborn screening program provided online training modules for healthcare providers regarding the policies, procedures, and best practices for newborn screening in Indiana. During this reporting period, 955 providers completed at least one of the six training modules available. The newborn screening program distributed 61,996 education materials to healthcare providers, community organizations, birthing hospitals, and midwives across the state to increase awareness of newborn screening during this reporting period.

Starting in May 2022, the newborn screening program started conducting hospital visits with a goal to visit all 83 birthing hospitals within a few years. For this reporting period, the newborn screening program visited 20 birthing hospitals to build partnerships and educate on best practices for newborn screening. Additionally, the newborn screening program created new quality indicator reports for hospitals and developed an audit process for hospitals that have significant recurring issues such as poor-quality specimen collection or significantly late reporting to the program. Hospitals on an audit are required to complete the six online training modules and provide certificates of completion. Additionally, the Genomics and Newborn Screening Director and the Newborn Screening Program Manager will complete an onsite hospital visit to address any additional concerns.

Folic Acid Education

Indiana has disparities in neural tube defect rates among the Hispanic population compared to the Non-Hispanic White and Non-Hispanic Black populations. The birth defects program created and printed folic acid education materials including an infographic and a checklist of common food items containing folate or enriched with folic acid. These materials were printed double-sided to include both English and Spanish languages with the goal of reducing neural tube defect rates and potentially mortality associated with severe neural tube defects in the Hispanic population.

Early Hearing and Detection and Intervention Program (EHDI)

Indiana’s EHDI team provided technical assistance and training to birthing hospitals, healthcare providers, and parents to meet the federal and state mandated goals of “1-3-6.” The EHDI “1-3-6” goals were mandated in 2000 by the Joint Commission on Infant Hearing and American Academy of Pediatrics and ensure the following: all babies born in Indiana receive a newborn hearing screening by “1” month of age, if they do not pass newborn hearing screening, they receive a diagnostic audiology exam by “3” months of age, and if identified as deaf or hard of hearing, are enrolled in early intervention by “6” months of age.

To comply with these requirements, Indiana EHDI is responsible for collecting hearing screening results on approximately 80,000 children born annually in Indiana. This includes providing onsite monitoring and training to all 85 birthing hospitals by our regional audiology staff. In addition, when a new birthing hospital staff member is identified for reporting newborn hearing screening results, Indiana EHDI trains them: approximately 40 staff members annually. Technical support includes staff working on 14,000 child files per year through phone calls and emails providing guidance to healthcare providers, parents and other programs and entities to ensure “1-3-6” goals.

If a baby does not pass the newborn hearing screening (3600 babies annually), our staff is responsible for ensuring that those babies receive diagnostic audiology testing by 3 months of age. The follow up procedures for children who do not pass newborn hearing screening for those 3600 children include phone calls to parents and sending letters to parents and physicians with several resources: including information on Help me Grow, MOMS Help Line, Safe Sleep, frequently asked questions about newborn hearing screening and developmental milestones (in Spanish and English). These efforts continue several times until a child’s first birthday or until diagnostic audiology results are entered in our system.

If a child is identified as deaf or hard of hearing, we provide education (230 children per year identified with congenital hearing loss by age one) to the child’s parents and physician through a tool kit that includes state and local resources and guidance for best practice services for deaf and hard of hearing children. We also provide one year of parent-to parent support for any family with a newly identified deaf or hard of hearing child (any age of diagnosis). This parent to-parent support is provided through a program called Guide by Your Side program and is a collaboration between Indiana EHDI and Indiana Hands and Voices. Each family is assigned to a parent guide who can provide support to the family after identification of permanent hearing loss through enrollment into early intervention services. In order to provide additional parent support after early intervention, EHDI now offers the ASTra program, which is primarily funded by Title V.

ASTra is a Deaf and Hard of Hearing Educational Advocacy Program that embodies the mission and vision of Hands & Voices, which is to provide support to families with children who are deaf or hard of hearing (D/HH) without a bias around communication models, methods, and educational settings so that every D/HH child has the opportunity to achieve their full potential. ASTra content is derived from years of direct advocacy experience working with families in schools, attending advocacy trainings from legal experts, providing trainings, and the Hands & Voices Advocacy Guidebook. Indiana is the 12th State to attain the ASTra Program Certification. Astra advocates are parents of deaf and hard of hearing children who have been highly trained in the education law and parent rights and can help families navigate the individual educational plan process. This is important for deaf and hard of hearing children to ensure adequate access to classroom and social interactions and academic accommodations are in place to support academic progress. During the first year of this program (2019-2020) we served, trained, and provided six Certified Astar Advocates with specialties in ASD, twins, Progressive Loss, and native Spanish speaking. The program expanded from serving 47 families from 2020-2021 to 111 families from 2021 to 2022. Of the 111 families served, 40 were Hispanic, 13 Black/African American, 54 Caucasian and 2 Asian.  The families served had D/HH children between the ages of two-and-a-half years old to 16 years old. Of the 111 families served, 45 families use a different language than English.

EHDI has initiated several collaborations with internal and external stakeholders to improve outcomes for deaf and hard of hearing children. It is well known that 3/1000 children are identified with congenital hearing loss through mandated newborn hearing screening efforts. It is also known that an additional 3/1000 children are identified with permanent hearing loss after the age of one.  EHDI has been tasked by CDC and HRSA to expand the education and collection of hearing screenings through age five. To accomplish this goal, the EHDI team has expanded their collaboration efforts with early childhood partners including Head Start and the Part C First Steps program, to identify ways to improve education to stakeholders on the importance of hearing screenings.

We have improved our partnership with the Genomics Newborn Screening program by providing guidance and live webinars for birthing hospitals, audiologists, and other healthcare providers regarding guidance for newborn screening procedures and follow up. We have identified several opportunities to exhibit at conferences such as the School Health Conference, WIC, Public Health Nurses, Physician conferences, First STeps and others to improve education about newborn screening and follow up.

We also collaborate with other stakeholders through an EHDI Advisory Committee that includes representatives parent organizations, Head Start, WIC, Center for Deaf and Hard of Hearing Education, Audiologists, physicians, nurses, parents, early intervention providers and parents. The Director of EHDI also participates in the Advisory Committee for the Center for Deaf and Hard of Hearing Education and the Indiana Perinatal Quality Improvement Collaborative Perinatal Genetics and Genomics committee for the Genomics Newborn Screening Program and on the MCH Lead team.

Adverse Childhood Experiences

The Indiana Youth Services Association, funded by Title V, created a statewide director position for the ACEs Indiana Coalition. The coalition consist of a team of individuals who went through the ACEs master training modules and commit to training others in their community. The trainings create a common language among community members and enhance and encourage resilient communities. The ACEs Indiana Coalition is dedicated to growing awareness on Adverse Childhood Experiences and building self-healing communities. The coalition was able to provide trainings in 22 cities throughout the state of Indiana. Through the various trainings, 1,731 individuals were trained through ACE Interface Master Training Program. In addition to the trainings, the ACEs hosts two yearly coalition meetings and 27 additional meetings regarding ACEs.