In Fiscal Year 2020 (FY20), the South Dakota Children and Youth with Special Healthcare Needs (CYSHCN) Program continued its focus on improving access to family-centered care and services for CYSHCN and their families. The COVID-19 pandemic created some challenges in carrying out some of the year’s planned activities, but progress was still able to be made in some areas.

During our 2015 MCH Needs Assessment one (1) state priority need was identified to address under the Children and Youth with Special Health Care Needs Domain:

• Improve and assure appropriate access to health services that are focused on families, women, infants, adolescents, and Children and Youth with Special Health Care Needs (CYSHCN).

However, state priority needs identified under child and adolescent health domains also are a need of CYSHCN and include:

• Improve early identification and referral of developmental delays
• Promote positive child and youth development to reduce morbidity and mortality (intentional/unintentional injuries, dietary habits, tobacco use, alcohol use, other drug utilization)
• Promote oral health for all populations

Under the National Performance Measure/Domain framework, one (1) National Performance Measure was chosen and the objectives, strategies, activities are identified within the State Action Plan framework.

At the end of this reporting period the MCH Impact Team workgroup members assigned to each national or state performance measure were asked to complete a data collection form.  The data collection form was a checklist of the strategies that the program was to address during the grant year. The workgroup members rated the degree to which the strategies were implemented, and the percentage of completion is included as the ESM for each measure.  In addition to this assessment for each measure, data was reported to provide a quantitative context for each strategy.  This ESM process allowed us to better report progress to date on all strategies.  Data collection form can be found at the link below: 

https://doh.sd.gov/documents/MCH/2020/DetailSheet_NPM11_FY20.pdf

DOH Strategic Plan Goal 1:  Improve the quality, accessibility, and effective use of health care

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

Data Statement:

Percent of children with special health care needs having a medical home: South Dakota did not exceed the 2020 target of 53.4%. This new target was set after SD surpassed its previous target of 50.8% with 53.0% of children with special health care needs having a medical home in 2017-2018. From 2018-2019, 48.8% of children with special health care needs had a medical home. South Dakota ranked 7th in the nation with a U.S. rate of 42.3%. The change from the base year (2016) to this year is not significant.

Percent of children without special health care needs having a medical home: South Dakota surpassed the 2020 target of 54.0% with 55.2% of children without special health care needs having a medical home in 2018-2019. In 2018-2019 South Dakota was ranked 7th in the nation with a significantly higher rate than the U.S. rate of 49%.

The full-length South Dakota MCH Annual Data Summary can be found here:

https://doh.sd.gov/documents/MCH/2022_SDMCH_DataSummary.pdf

State Objective 1:

By June 30, 2020, increase the percentage of CYSHCN who report receiving care in a well-functioning system from 15.6% (2016-17) to 16.0% (NSCH)

State Objective 1 Data Statement:

In 2019 South Dakota exceeded the 2019 target of 16.0% with 16.3% of children with special health care needs receiving care in a well-functioning system. A new annual target was set at 16.5%. South Dakota did not reach the target of 16.5% with 15.7% of children with special health care needs receiving care in a well-functioning system from 2018-2019. South Dakota was ranked 22nd and is higher than the U.S. rate of 14.1%.

State Objective 2:

By June 30, 2020, 99.0% of all infants whose newborn screening test results are outside the normal limits for a newborn screening disorder will receive prompt and appropriate follow-up testing. (Newborn Screening Program)

State Objective 2 Data Statement:

South Dakota exceeded the 2020 target of 99.0% with 99.5% of infants whose newborn screening test results were outside the normal limits and received prompt and appropriate follow-up testing. The 2019 rate was 99.4%. There has been no significant trend between 2015 and 2019.

Strategies:

11.1. Enhance family access to needed supports and services

• Continued interagency agreement with Department of Human Services (DHS) to support respite care services across the state. Respite care can be especially important to families of CYSHCN, and through our interagency agreement with DHS, 638 children/adults were served during this reporting period.
• Contracted with Sanford Health to support the provision of genetics outreach clinics in the western part of the state. With this provision, Sanford provides the services of a geneticist and a genetics counselor by conducting 8

1-day outreach clinics in Rapid City, SD per calendar year. A total of 41 individuals were served by this outreach in Fiscal Year 2020.                           

• Provided financial assistance through our direct service reimbursement program, Health KiCC, to low income families to assist with the cost of medical treatment.  A total of 23 clients were served through Health KiCC during this reporting period. During this reporting period, two clients aged out of the program and one family chose not to re-enroll, leaving 20 clients enrolled at the end of the grant year.
• Met with the developmental screening workgroup to discuss progress on developmental screening and areas of improvement.
• The DOH Health Home Program was discontinued on September 30, 2020. The program was serving one individual at the time of discontinuation.
• In January 2020, the DOH and Sanford Health launched a Patient Navigation Program at the Sanford Children’s Hospital in Sioux Falls, SD. Within this program, MCH funds support a Registered Nurse Patient Navigator who is stationed in the Children’s Hospital and provides extensive care coordination for patients and their families. The program is currently at capacity with 30 participants, and plans are in place to add a Nurse Practitioner to the program in FY21 which will increase program capacity to 60 participants during the program’s second year. The program also involves an ongoing comprehensive third-party evaluation provided by South Dakota State University (SDSU) Population Health to inform ongoing program planning. In addition, MCH funds were used to provide Tito Care telehealth units to all 30 program participants to increase accessibility and communication with the Patient Navigator and decrease trips to the clinic for medically vulnerable patients during the COVID-19 pandemic.

Challenges:

Due to the COVID 19 pandemic, Sanford Health did not provide genetics outreach services from March 2020 through May 2020.

The CYSHCN program had planned to present to the state’s Administrative Rules committee to complete the phase out of the Health KiCC program, however, staff became extensively involved in addressing the COVID 19 pandemic, so these plans were postponed.

The CYSHCN Program met with a Department of Health Consultant at Avera Health early in 2020 to initiate conversations to establish a care coordination program within the Avera Health System. However, the program was not able to schedule any additional meetings with Avera in 2020 due to both Department of Health and Avera staff focusing on the COVID 19 pandemic.

11.2.  Strengthen statewide capacity for parent/family training and support.

• The CYSHCN Director began serving on the SD Developmental Disabilities Council in August, 2020. The Council is comprised of family advocates and self-advocates, as well as representatives and professionals from many different organizations that support individuals with developmental disabilities. The Council designates funding to various organizations in the state that are working to further the mission of assisting people with intellectual and developmental disabilities and their families to achieve the quality of life they desire.
• The CYSHCN Director also began serving on the South Dakota Supporting Families Community of Practice state team, which focuses on the Charting the LifeCourse framework and identifies state-specific innovation areas for integrating and implementing Charting the LifeCourse tools and practices.
• The CYSHCN and WIC Directors met virtually with the Project Director at the SD Statewide Family Engagement Center to discuss developing a new family engagement initiative in the Office of Child and Family Services. Plans were made for the Project Director to travel to speak in person to the Office of Child and Family Services (OCFS) leadership team to familiarize them with the Center’s work and how we can collaborate on future projects.

• OCFS’s MCH Director served as advisory board member on the South Dakota Statewide Family Engagement Center grant which is a five-year effort to connect families, schools and communities to help all children to be successful from cradle to career. The MCH Director served in this role until February 2020.

      Challenges:

The COVID-19 pandemic presented a challenge in scheduling a visit from the SD Statewide Family Engagement Center Project Director. The CYSHCN and WIC Directors were able to meet with the project director virtually but plans to have the director visit and speak to the OCFS leadership team were continually postponed and rescheduled, with plans for a visit eventually put on hold indefinitely. The leadership team was unable to meet with the Project Director virtually due to extensive focus on the COVID-19 pandemic. The pandemic also pulled staff from the Office of Child and Family Services to work in the COVID Call Center, conduct case investigations, and do contact tracing which further postponed any new family engagement and training projects.

11.3. Coordinate the newborn screening infrastructure to address: (a) contract laboratory for newborn screening of all SD births; (b) medical consultants to address appropriate testing and treatment for presumptive positive; and (c) birth certificate match and short-term follow-up to ensure all babies are screened.

During this grant period, longtime Newborn Screening Coordinator, Lucy Fossen, retired and a new Newborn Screening Program Manager, Lauren Pierce, began in June 2020. The SD newborn screening program continued to utilize a contract newborn screening laboratory, the State Hygienic Laboratory at the University of Iowa (SHL).  SHL provides regional newborn screening testing services and initial notifications to 4 state newborn screening programs.  To ensure every infant born in SD has a newborn screening completed (SDCL 34:24:16-25), the contract laboratory sends newborn screening reports electronically through a match process which are linked to the infant’s birth certificate via a secure web-based software application known as the Electronic Vital Records and Screening System (EVRSS).  This system has the ability to identify infants who may have missed, or the parents have refused the newborn screening.  Infant hearing screening results are reported directly into EVRSS as hospitals file birth certificates. 

During this grant period, the MCH team continued to partner with SHL for newborn screening testing and destruction of specimen collection cards.

• SHL reported 97.9% of newborn screening results for CY18 were provided to SD healthcare providers <= 7 days of age.
• Newborn Screening Program Manager participated in Iowa SHL’s monthly partnership calls among the four state newborn screening programs; Alaska, Iowa, North Dakota, and South Dakota.
• NBS Program Manager met with NBS follow-up nurse, Sharina Tveit, to undergo orientation to the follow-up program and procedures.
• NBS Program Manager attended the 2020 Virtual APHL Newborn Screening Symposium.
• During this grant period, 99.5% (11,827/11,889) of the birth certificates had matching newborn screening laboratory results.
• During this grant period, 613 infants had either presumptive positive or borderline newborn screening test, contact was lost with 2 infants, lost contact and 1 infant’s parent/guardian refused to pursue diagnostics.  

11.4. Implement a quality improvement effort in the newborn screening program to include: (a) maintain less than 1% rate of unacceptable newborn screening specimens due to improper collection; (b) the percentage of time critical newborn screening results that are reported within 5 days of birth;   and (c) sharing Early Hearing Detection and Intervention (EHDI) data with the SD EHDI Collaborative in an effort to reduce lost to follow-up rates.

• During this reporting period the unacceptable specimen rate increased to 1.6%.

• During this reporting period the percentage of time-critical results reported within 5 days of birth was 94.0%.
• The percentage of birth certificate’s matched to the newborn screening laboratory report was 99.5% (11,827/11,889).
• The percentage of non-critical screening results reported within 7 days of birth was 88.9%.
• MCH Newborn Screening program provided best practices and specimen rejection criteria education to hospitals demonstrating poor quality newborn screening specimen rates.

Challenges:

Despite the many challenges caused by the COVID-19 pandemic, the metabolic newborn screening rate remained high at 99.5%. Poor quality newborn screening specimen rates continued to increase and consistently fall above the program goal of less than 1.0% among submitters statewide. The newborn hearing screening rate decreased from 96.0% to 94.2%, which may be due to the COVID-19 pandemic.  Another challenge is that there are no state mandates regarding EHDI reporting or performance of infant hearing screening in South Dakota.

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

83% completion of identified strategies