Children with Special Health Care Needs- Application Year

In this section, South Dakota MCH Title V reports on planned activities in the Children and Youth with Special Health Care Needs (CYSHCN) Health Domain for the period October 1, 2021 through September 30, 2022.  In the CYSHCN Domain, selected priorities and corresponding National Performance Measures or State Performance Measures are as follows:

Priority: Access to care and services

NPM 11: Percent of children with and without special health care needs having a medical home

ESM 11.1: Percentage of families enrolled in care coordination services who report an improvement in obtaining needed referrals to care and/or services

2021-2022 Objective and Strategies

Objective: Increase the percentage of CYSHCN who report receiving care in a well-functioning system from 16.3% (2017-2018) to 17.8% by 2025 (NSCH)

Proposed Strategies:

11.1: Enhance equitable family access to needed supports and services

• Provide financial support to DHS respite care program for families of CYSHCN and refer families to the program to enhance equitable access to respite services across the state.
• Provide financial support for operational costs of genetics outreach clinics in Rapid City, SD through partnership with Sanford Health and cover the cost of travel from Sioux Falls to Rapid City for the geneticists and genetics counselors to provide access to these services on the Western side of the state.
• Partner with DSS to support equitable provision of special needs car seats
• Explore additional opportunities to link families of CYSHCN to needed resources in our state. The CYSHCN Director will continue to work closely with partners to identify new and existing resources available to families in South Dakota.
• Provide financial support to low income families of CYSHCN through Health KiCC program while continuing to phase the program and explore alternative resources for remaining participants.

11.2:  Identify and implement strategies to equitably advance medical home components for families of CYSHCN through access to family centered care coordination

• Partner with Sanford Health to provide care coordination services for families of children with complex medical conditions at Sanford Children’s Hospital.
• Collect and review data from Sanford Children’s Patient Navigation Program to identify needs and health disparities and inform program planning.
• Explore new opportunities for expansion of care coordination services in the state, including opportunities for linking families of newborns and infants with special health care needs to medical homes.

11.3 Coordinate the state newborn screening infrastructure focused on equitable testing and access to follow up services

• Contract with the Iowa State Hygienic Laboratory for the newborn screening and initial follow up of all South Dakota births.
• Partner with Sanford Children’s Specialty Clinic to contract medical consultants, genetics counselors, and a follow up nurse to address equitable and appropriate testing, treatment, and follow up for out-of-range results and presumptive positive cases.

New Approach to Evidence- Based Strategy Measures

The detail sheets originally developed for each National and State Performance Measure in FFY17 continued to be updated and utilized through FFY20 to capture program effectiveness. Beginning in FFY21, we will be taking a different approach to ESMs and measuring the effectiveness of our efforts based on technical assistance and training received from the MCHB Evidence Center.

New Efforts

• Sanford Patient Navigation Program:  In 2021, this program plans to expand to include a Certified Nurse Practitioner (CNP). This will allow the program to expand to a second and possibly a third cohort. Cohorts are approximately 30 clients.

• Equitable promotion of services: The CYSHCN Program will work with our partners to ensure resources are promoted to all populations and reach people where they are.

• Linking families to resources: The CYSHCN Program will continue to reach out to family organizations, medical entities, and other state organizations to create a more comprehensive list of the resources available for families of CYSHCN in South Dakota and will move forward with equitable promotion and dissemination.

Ongoing Efforts Supported by MCH for the CYSHCN Domain

• The CYSHCN Program will continue to pursue additional opportunities to provide care coordination in South Dakota.

• The CYSHCN Program works with the Department of Social Services to equitably promote the provision of special needs car seats. This effort will continue to involve looking at how the program is currently being promoted and identifying opportunities to reach all families, including those who do not have access to the internet. The CYSHCN Program will also work with other entities we partner with to identify ways to promote the services more equitably.

• The South Dakota Early Hearing Detection and Intervention (EDHI) Collaborative, a partnership between the University of South Dakota and the South Dakota Department of Health State EHDI program, along with other partners including the South Dakota School for the Deaf was established in 2015. The SD EDHI Collaborative works to improve early identification of hearing loss in children and promote early intervention services for children and their families across the state of South Dakota. The efforts of the SD EDHI Collaborative are funded through a Health Resources Administration and Services grant through the University of South Dakota with Department of Health state EHDI program support.

• The South Dakota EHDI Collaborative continues to modify the tele-audiology infrastructure. Presently, there is one tele-audiology clinic located in Winner, SD. Clinics are also being developed at Sanford Aberdeen and Hot Springs, SD.  Tele-audiology sites are geographically located in areas of high lost to follow-up rates and sites may be modified according to usage. At these sites, infants have been identified with permanent hearing loss in a timely manner and connected with resources and support within the state such as the Birth to Three program and the South Dakota School for the Deaf.

• The Newborn Screening Program Manager participates in monthly quad-state meetings with the Iowa State Hygienic Laboratory, the Iowa Newborn Screening Program, the Alaska Newborn Screening Program, and the North Dakota Newborn Screening Program. These meetings bring together the four state programs that utilize the Iowa State Hygienic Laboratory for newborn screening processing to network, work through emerging issues, and collaborate.

• The Newborn Screening Advisory Committee was reinstated in 2021. The committee is made up of members that represent hospitals, laboratories, health care professionals, and families. The committee will be asked to provide detailed advice and guidance on Spinal Muscular Atrophy (SMA) and Pompe disease to assist SD DOH in making informed decisions about how to proceed with adding each disorder to the newborn screening panel.

• The CYSHCN Director facilitates the MCH workgroup specific to NPM 6 – parent completed developmental screenings.  The CYSHCN program supports the cost of early identification and referral of children with possible developmental delays via the purchase of Ages & Stages Developmental Screening instruments and staff time to refer families for further evaluation if a concern is identified on the screening.

• The CYSHCN Director participates in The National Community of Practice State Team meetings, which bring together state agency representatives, public and private partners, and family members focused on the mission of supporting families of individuals with intellectual and developmental disabilities. In 2021, the State Community of Practice Team joined with other workgroups within the Department of Human Services Division of Developmental Disabilities and created a Stakeholder Collective, which meets quarterly and includes families of and individuals with disabilities.

• The CYSHCN Director, MCH Program Director, and Office of Child and Family Services Administrator participate in quarterly DOH-Medicaid Collaborative meetings as well as quarterly Child and Family Services Interagency Workgroup meetings. These meetings bring state agencies together that serve families to discuss current projects, identify and work through challenges, and align our priorities and objectives to promote collaboration.

• The DOH CYSHCN program is part of a multi-program contract to maintain our vital records data system.  This allows us access to data specific to births and deaths within our state.  Data is collected specific to maternal health issues during pregnancy that could affect the birth outcome.