III.E.2.c. Children with Special Health Care Needs: Application Year

 

 

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): 

ESM11.1: Percent of families who received effective care coordination.

ESM11.2: Percent of children diagnosed with a condition identified through newborn screening who receive an annual assessment of services

 

Current Activities

The CSHCS Division is focusing efforts on the care coordination component of medical home around the areas of family empowerment, system navigation, education, and referral to medical and community-based resources. 

The CSHCS Division has a Care Coordination Section that provides coordination to CSHCS program participants and all CYSHCN statewide.  The Care Coordinators assess the families’ needs and make appropriate referrals to community-based services, medical services, and other identified service areas. They are also equipped to make referrals outside of service needs.  These may include referrals to food pantries, housing, as well as information on support groups and connections to other family support organizations within Indiana.

Indiana will continue to work with the Health Care Delivery System Innovations for Children with Medical Complexity CoIIN led by the Catalyst Center. The ISDH/Title V program serves as the lead organization for this project. Indiana continues to pilot place-based care coordination within the health care system that better provides comprehensive family-centered assessment, cross-communication, and integration of services into communities. This includes piloting an innovative payment model through Medicaid for care coordination reimbursement.  Currently, the project is working towards measuring and evaluating the value-add of the project and short – and long-term sustainability.

Plans for the Coming Year

The CSHCS Division will continue to use care coordination as the primary focus of the medical home national performance measure.

The Indiana team will continue our work with the Health Care Delivery System Innovations for Children with Medical Complexity CoIIN project. We will have an innovative payment model in the pilot sites funded by Indiana Medicaid through Managed Care Entities (MCEs) so data collection can begin on the effectiveness of the care coordination model.

 

The CSHCS Division will continue to work with the ISDH MCH Division on the implementation and spread of HMG in the state. The collaboration between HMG, the CSHCS Care Coordination Section, and the 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 includes continuing conversations to create a plan with IN First Steps (Part C) to create a more comprehensive and coordinated early intervention system.

 

Indiana Genomics and Newborn Screening (GNBS) program, in collaboration with the CSHCS Division, will  implement a standard process to review annual services received by newborns with a condition identified through newborn screening. GNBS currently requires an annual report from their partners who provide care-coordination and services to newborns identified with a condition from the dried blood spot screen. We plan to expand this reporting requirement to include a review of the annual services received by newborns. An annual review of the services received by newborns identified with a condition will allow the state to understand any gaps and needs that may need addressed.

 

GNBS will collaborate with and educate home visiting programs and other state programs about newborn screening and follow up. We plan to work with home visiting programs to provide education to their staff. This will increase the awareness of newborn screening prenatally. We plan to collaborate with other state programs to increase collaboration and education of newborn screening. This will increase the awareness of newborn screening among state programs.

 

 

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.

ESM12.3: Percent of participants who feel empowered to make decisions effecting their health and well-being

 

 Current Activities

The CSHCS Division continues to work with other agencies to formulate a structured plan for transition to adulthood.  Through the planning process the Center for Youth and Adults with Conditions of Childhood (CYACC) will look to offer transitional care to patients with special health care needs over the age of 18 years old.

 Plans for the Coming Year

ISDH will continue to foster transition throughout the state of Indiana via CYACC.  The statewide program provides clinical support for families with youth who have complex transition needs as well as provides training and technical assistance for health professionals and health professional students.  CYACC uses interdisciplinary comprehensive transition assessment to create shared plans of care and then further support families with care coordination service delivery based on their medical and social complexity. Involvement of medical learners includes medical students, categorical and combined pediatric and internal medicine residents, genetics students, social work, nursing, and others.  CYACC also works to engage a broad array of existing organizations and agencies with transition issues and methods to collaborate together. Learners experience didactic and clinical session, including brief training or more longitudinal service learning.

CYACC will explore a statewide expansion and integration model of its services for sustainability.  The center recognizes its services are currently centralized and wants to determine if a regional approach is feasible and would be beneficial to families.  CYACC will also explore what this would look like in potentially partnering with school-based clinics in the state.

 

State Priority Need:

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

 

State Performance Measure (2020 - 2025):

SPM: 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.  We 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 is to now 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.  These areas include, but is not limited to: oral health, newborn screening, nutrition and physical activity, early intervention, social and emotional development and well-being, developmental screening, and ACEs. We also acknowledge that this cannot be achieved without utilizing a systems building approach focused on intentional collaboration and partnership, with both agencies and families.  This mutli-pronged approach will create cohesive and comprehensive systems that are responsive to holistically meeting the families’ needs.

 

 

 

2015-2020

 

State Priority Need:

Access to Care

 

State Performance Measure

SPM 5: Developmental Screening

 

Current Activities (2015-2020)

The Indiana State Department of Health, in collaboration with the Indiana Department of Child Services, has launched the Help Me Grow (HMG) model to the state.  This model is a system approach to designing a comprehensive, integrated process for ensuring developmental promotion, early identification, referral, and linkage to early childhood resources and services.  It reflects a set of best practices for designing and implementing a system that can optimally meet the needs of young children and families.  It is specifically designed to help states organize and leverage existing resources in order to best serve families with children at-risk for developmental delay.  The model does not change or reinvent these programs and services, rather, it ensures collaboration among multiple systems to ensure access to services and seamless transitions for families. The Early Learning Advisory Committee, Child Development Well Being workgroup was instrumental in recommending that Indiana explore the HMG model and are key partners in the implementation piece of HMG.

 

The MCH and CSHCS divisions continue to strengthen our relationship with Indiana’s Learn the Signs.  Act Early.  (LTSAE) Ambassador through HMG and ECCS.  In January 2020, our ECCS team partnered with our LTSAE Ambassador and the Marion County early childhood librarians to provide training on the LTSAE materials.  Marion County is the largest county in the state.  The head librarian sent out an informal survey asking about developmental milestones and screening to understand if there was a need for early childhood librarians have this information. The survey came back indicating that there is a definite need for more information around the LTSAE information and increased knowledge base around developmental screening.  A training conducted with over 40 early childhood librarians within Marion County.  

 

The MCH Division in collaboration with the LTSAE Ambassador was awarded funding from the Association of University Centers on Disabilities (AUCD) to implement and integrate use of the LTSAE into Indiana’s Head Start and Early Head Start programs.  Indiana is well-positioned with our partnerships and from previous work to engage programs to use these materials in a meaningful way. 

 

The CSHCS Division continues to explore adverse childhood experiences (ACEs) in an effort to expand what is traditionally measured for developmental screening, health, and well-being.  Both MCH and CSHCS staff were trained as Master Trainers and have conducted additional train-the trainer workshops.  Currently, staff has collaborated with other agencies, attended conferences, and participated in an agency workgroup.

 

 

Through the Help Me Grow (HMG) model, ISDH will continue our system approach to designing a comprehensive, integrated process for ensuring developmental promotion, early identification, referral, and linkage to early childhood resources and services.  It reflects a set of best practices for designing and implementing a system that can optimally meet the needs of young children and families.  It is specifically designed to help states organize and leverage existing resources in order to best serve families with children at-risk for developmental delay.  During the coming year, plans to expand HMG to additional counties and systems, including Indiana’s IDEA Part C program (First Steps).  

 

  Current Activities (2015-2020)

This year, Indiana added three new conditions to the newborn screening panel increasing the total number of conditions screened for to 52. Screening for the three new conditions will start on July 1st, 2020. The three new conditions are Krabbe disease, MPS-I (Hurler syndrome), and Pompe disease. They are screened through the dried blood spot performed between 24-48 hours after birth. MPS-I and Pompe are on the Recommended Universal Screening Panel (RUSP), whereas, Krabbe disease is not currently on the RUSP.

Krabbe disease is also known as globoid cell leukodystrophy. It’s an inherited disorder that destroys the protective coating of nerve cells in the brain and nervous system. As the disease progresses it may lead to seizures, loss of development, progressive loss of hearing and sight, stiff posture and inability to swallow and breathe. Current treatment requires stem cell transplant before symptom onset for best outcome. It’s estimated to affect about 1 in 100,000 people in the United States. 

 

MPS-I is also known as Hurler syndrome. It’s an inherited disorder that causes an accumulation of glycosaminoglycans (GAGs) within the lysosomes. GAGs accumulate as a result of enzyme deficiency. This causes different organs and tissues in the body to become enlarged. Many people with this condition may have macrocephaly, hydrocephalus, heart valve anomalies, distinct facial features, an enlarged spleen and liver, a large tongue, and enlarged vocal cords. Severe forms may lead to a decline in intellectual function and rapid disease progression. Current treatment options, which may lessen symptoms, include bone marrow transplant and enzyme replacement therapy. It’s estimated to affect about 1 in 100,000 newborns in the United States.

 

Pompe disease is also known as glycogen storage disease type II. It’s an inherited disorder that causes glycogen to build up in the body’s cells as a result of acid alfa glucosidase enzyme deficiency, which breaks down complex sugars in the body. The glycogen buildup occurs in organs and tissues, especially muscles, causing them to break down and not function normally. Muscle weakness, poor muscle tone, enlarged liver, and heart defects are common in individuals with this condition. Current treatment includes enzyme replacement therapy. It’s estimated to affect about 1 in 40,000 people in the United States.

Additionally, the Genomics and Newborn Screening program is currently working to improve timeliness of detection through high quality bloodspot specimens. Efforts include monitoring and reporting quality indicators with birthing facilities, performing onsite and virtual outreach and support, and establishing an advisory committee. These efforts work to ensure newborns positive for disease and families impacted by this are connected with specialized healthcare and resources within seven (7) days of birth, reduce delay due to repeated screening from administrator error and expands the system of care for families to access specialists throughout the state.

In the fall of 2019, Indiana held a Child Maltreatment Summit with individuals committed to child well-being throughout the world.  The workgroups included:  Definitions, Laws, and Standards; Education and Training; Family Resource Provision Through Public Health Approaches; Child Participation and Agency Social Norms:  Indicators and Systems for Monitoring and Promoting Child Well-Being (including protective factors); Racism , Cultural Diversity, Bias, and Prejudice; Coherence, Cooperation, and Synergy Across and Within Multiple Tiered Sectors.

Plans for the Coming Year

Future plans for the Genomics and Newborn Screening program include the expansion of the newborn screening panel. Indiana’s legislature added X-linked adrenoleukodystrophy (X-ALD) to the panel and will start screening July 1, 2021. With this addition, Indiana will screen for all conditions on the current RUSP and will bring Indiana’s total conditions screened for to 53. Additionally, the Indiana legislature allowed the Genomics and Newborn Screening program to include newborn screening results into the Children and Hoosier Immunization Registry Program (CHIRP). Currently, newborn screening results are sent to physicians and may be accessed electronically via a web application housed on the State Health Gateway. Adding newborn screening results in CHIRP will increase access to newborn screening results, reduce the need for physicians to access both sites, and increase the public’s ability to know their carrier status for Sickle Cell trait and other genetic conditions.

 

The Indiana Birth Defects and Problems Registry (IBDPR) is a population-based surveillance system to monitor prevalence rates for conditions affecting fetal, infant and child health. The goal of surveillance through IBDPR is to develop public health initiatives for increased awareness, population education, and risk reduction for disease prevention. Currently, IBDPR collects data on 49 reportable conditions, 47 of which are designated nationally by the National Birth Defects Prevention Network. Indiana also collects data on Autism spectrum disorders and Fetal Alcohol Syndrome.

 

Nationally, it is estimated that about one in every 33 babies is born with a birth defect each year, and birth defects remain a leading cause of infant mortality. About 22.9% of Hoosier infant deaths were attributed to birth defects in 2018. Cardiovascular, musculoskeletal, and genitourinary defects affect Hoosier babies at the highest rates. Collaboration with the Fatality Review and Prevention division will allow the IBDPR program to determine a more accurate prevalence of newborns with anencephaly and other life-threatening conditions that may not result in a live birth. Prevention and awareness campaigns, such as a folic acid campaign, may be developed based on the findings of this data analysis to reduce infant mortality associated with congenital anomalies.

 

Child maltreatment rates in Indiana are rising.  There have been 60 individuals throughout Indiana selected to be trained in a child maltreatment training series that will start in the winter.  The series will bring awareness of what to look for, how to train caregivers to reduce child maltreatment practices, and general understanding of the issue and challenges.