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, 2019 through September 30, 2020.  In the CYSHCN Health Domain, selected priorities and corresponding National Performance Measures or State Performance Measures are as follows as well as their correlation to the South Dakota Department of Health (DOH) Strategic Plan:

South Dakota DOH Strategic Plan Goal 1 – improve the quality, accessibility, and effective use of health care.

Priority Need: Improve and assure appropriate access to health services that are focused on families, women, infants, children, adolescents, and children and youth with special health care needs.

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

ESM 11.1: The degree to which the South Dakota Title V program has implemented evidence-based or informed strategies to assure access to a medical home.

2019-2020 Objectives and Strategies

By June 30, 2020, increase the percentage of children and youth with special health care needs who report receiving care in a well-functioning system from 15.6% (2016-2017) to 16.1% (NSCH).

By June 30, 2020, increase the percentage of infants whose newborn screening test results are outside of the normal limits for a newborn screening disorder and who receive prompt and appropriate follow-up testing from 98.9 (2018) to 99.2%.

Proposed Strategies:

11.1.1: Enhance family access to needed supports and services

• Support respite care program
• Support genetics outreach clinic in specialty shortage areas
• Provide financial support to eligible families to assist with cost of medical treatment and/or care coordination.
• Promote early and adequate developmental screening and referral to services
• Identify strategies and work with partners to advance care coordination in primary care and specialty care.

11.1.2:  Strengthen statewide capacity for parent/family training and support

• The South Dakota MCH Program will continue to expand Family engagement efforts and will incorporate findings from the OCFS 5 Year Needs Assessment Project
• The MCH Director will continue to serve as an advisory committee member for the South Dakota Statewide Family Engagement Center project

11.2.1 Coordinate the newborn screening infrastructure to address:

• Contract laboratory for newborn screening of all South Dakota births;
• Medical consultants to address appropriate testing and treatment for presumptive positive; and
• Birth certificate match and short-term follow-up to ensure all babies are screened
• Explore additional newborn screening disorders for inclusion to the newborn screening panel with contract laboratory.

11.2.2 Implement a quality improvement effort in the newborn screening program to include:

• Maintain less than 1% rate of unacceptable newborn screening specimens due to improper collection
• Time critical presumptive positive results are reported within 5 days of birth
• Early Hearing Detection and Intervention (EHDI) data shared with SD EHDI Collaborative in efforts to reduce lost to follow-up rates.

Analysis of Progress; Current Effectiveness

The detail sheets originally developed for each National and State Performance Measure in FFY17 continue to be updated and utilized to capture program effectiveness through qualitative and quantitative data. This information is used to assist in the determination of continuation of a measure, as well as future strategies/activities. The detail sheet for the CYSHCN Health Domain can be viewed here:

https://doh.sd.gov/documents/MCH/2020DetailSheet_SDNPM11_ESM.pdf

New Efforts

• The South Dakota MCH program will continue to improve website content and outreach in order to increase the percentage of children and youth with special health care needs who report receiving care in a well-functioning system.
• The South Dakota MCH program will continue to work with South Dakota Medicaid to improve implementation and utilization of the Health Home pilot to provide medical home components to CYSHCN.
• Explore additional entities to partner with on a pilot to increase care coordination in a medical specialty setting
• The South Dakota EHDI Collaborative is developed a tele-audiology infrastructure in South Dakota to provide families access to a pediatric audiologist at a more feasible distance.
• The South Dakota MCH Program will continue implementation of an office-wide, five-year needs assessment of the health and wellbeing of women, children and youth, including those with special health care needs, through focus groups and a statewide stakeholder meeting. Priorities identified during these meetings, in addition to assessment data findings, funding guidelines and project deliverables will inform the development of a final report for use in future program development.

Overall system of care for the Children and Youth with Special Health Care Needs Domain

• 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 South Dakota Department of Health state EHDI program.

The South Dakota EHDI Collaborative developed a tele-audiology infrastructure in two communities located in geographic areas with high lost to follow-up rates. Through the tele-audiology system of care, infants have been identified with permanent hearing loss in a timely manner. Infants are also connected with resources and support within the state with entities such as Birth to Three and the South Dakota School for the Deaf.

• The DOH CYSHCN program assists with the purchase of special needs cars seats to be provided via the Child Safety Seat Distribution Program.  The Child Safety Seat Distribution Program focuses on keeping children safe by providing child safety seats at no cost to families that meet income eligibility requirements.
• The CYSHCN Director facilitates the MCH Impact Team 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 DOH CYSHCN program has an interagency agreement with the Dept. of Human Services to assist in the provision of the Respite Care Program. Caretakers of children or adults with special needs often face serious problems and stress as a result of balancing the needs of their child or adult with special needs with the needs of other family members. These breaks, that respite care provides, allow families time to tend to the needs of their children, spouses, and themselves. Respite care can range from a few hours of care provided on a one-time basis to overnight or extended care sessions.
• The DOH CYSHCN program contracts with Sanford Health to provide genetics outreach services through periodic clinics utilizing the services of a geneticist and genetics counselor.
• The DOH CYSHCN program is a 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.