Background and Introduction

The DOH’s OCFS administers the Title V program and Title V MCH Block Grant for SD. The OCFS has conducted needs assessments every five years to understand the health needs for SD’s pregnant women, mothers, infants, children, and CYSHCN. The needs assessment provides an opportunity for the OCFS to evaluate progress toward achieving performance measures, assess population health status for families and individuals (including underserved populations), assess capacity of OCFS staff and programs to serve families and individuals, and to select priorities to address. An external public health consultant, SLM Consulting LLC, was contracted to assist with planning and implementation of this needs assessment. In the fall of 2018, the OCFS initiated the needs assessment process, to help shape the 2020-2025 State Action Plan.

Planning took place between September and December 2018 and included identification of the process design and timelines, staff roles to support planning and implementation, guiding frameworks and principles, partner organization involvement, a communication plan, and data collection methods. Implementation of the needs assessment occurred between January 2019 through December 2019 focused on broad stakeholder engagement and comprehensive data collection and analysis that informed identification of priority needs for SD’s maternal and child health population to address between 2020 and 2025. This report provides an overview of the MCH needs assessment process and findings, including strengths and needs of the process and health status of populations by domain.

Process, Goals, Frameworks and Guiding Principles

The goal, frameworks, and guiding principles that informed the needs assessment were chosen to ensure the process engaged priority populations across the lifespan and addressed health equity. The needs assessment was shaped by guiding principles that supported a comprehensive and inclusive process.

Two frameworks shaped the needs assessment process, including the Life Course Theory (LCT) and Health Equity Model (HEM). Utilization of the LCT was important to first understand health issues that impact the MCH population at all stages of life, including health patterns and disparities. Secondly, the HEM was used in alignment with the Life Course Approach to conceptualize social determinants of health that impact the MCH population across the life course. Specifically, understanding factors that contributed to health issues, including social, economic, and physical factors, was important to shape the needs assessment and identify root causes impacting health outcomes, priority needs, and action plans. The OCFS adapted the HEM of the Colorado Department of Public Health & Environment.

Guiding principles that supported the implementation of a comprehensive and inclusive process, as well as the needs assessment frameworks included:

• Evidence-based decision making;
• Using a health equity lens;
• Respond to emerging issues and trends that affect families and individuals in SD;
• Social determinants of health;
• Input from diverse stakeholders and partners;
• Do not reinvent the wheel; and
• Setting realistic priorities and performance measures.

Methodology

The needs assessment was shaped by a collaborative approach that engaged multi-sector partners, families, and individuals from across the state through data collection and information gathering approaches, including surveys, regional partner meetings, and focus groups. Input was sought from partner organizations, families, and individuals who represent broad perspectives, with targeted outreach to ensure representation from diverse SD geographies and underserved populations. New and existing partners were engaged throughout the process, with an emphasis on ensuring transparency regarding the process and fostering sustainable partnerships.

The roles that supported planning and implementation of the needs assessment included the following:

Needs Assessment Project Team: This team included a core group of OCFS staff, including the Administrator, MCH Program Director, Bright Start Home Visiting Manager, MCH Epidemiologist, and SLM Consulting. This team served as the core team who helped design and facilitate the process, develop guiding principles, a communication plan, and data collection methods, as well as identified the leadership roles necessary to implement the process. This team met every other week to support planning for the implementation of the needs assessment.

OCFS Advisory Committee: This team included OCFS program leaders who helped inform the process design and timelines, prioritization, and served as a pipeline to partner organizations, families and individuals. Advisory Committee members are in communities across South Dakota. The Advisory Committee was convened monthly starting in November 2018.

MCH Impact Team: This team includes DOH offices and program, including the Office of Chronic Disease Prevention and Health Promotion, Office of Health Statistics, Communications, Immunization Program, and the OCFS staff who helped to inform decisions on the process, data collection, and identification of priorities for the 2020-2025 Action Plan.

Partner Organizations: Partners included organizations, agencies, and stakeholders who the OCFS Needs Assessment Project Team, Advisory Committee, and MCH Impact Team identified as integral to support a collaborative needs assessment process.

Families & Individuals: These populations included men, women, children, and youth (including CYSHCN) who are served by the OCFS programs and partner organizations, providing a community perspective on health issues.

A comprehensive communication plan with media outlets shaped the implementation of the needs assessment. The plan was designed to engage and keep partners, key stakeholders, families, and individuals and the MCH Impact Team updated on the process. An internal DOH graphic designer formatted communication resources to ensure consistent branding and design.

Stakeholder Engagement

A collaborative approach was the foundation of the needs assessment process, focused on engaging diverse partners and stakeholders to inform a comprehensive understanding of health and well-being issues that impact families and individuals across SD. Input was gathered from stakeholders who represented state agencies, community-based organizations, health care providers, tribal agencies, as well as local community members, families, and individuals disproportionately impacted by health and well-being issues. The process engaged stakeholders across the state through regional partner meetings, focus groups, and surveys that gathered input from individuals, families, and communities.

Partner Organizations

The OCFS Needs Assessment Project Team and Advisory Committee identified existing and new partners to participate in the needs assessment process for data collection, priority setting, and action planning. Engaging partners in this way provided an opportunity to expand the reach of Title V, understand shared priorities and strengthen the foundation of coordinated health and community systems of care.

Partners whose focus included working with women, infants, and children, including children with special health care needs, as well as families and individuals impacted by health disparities were invited to participate. Outreach totaled 110 partner organizations, representing 19 sectors, including but not limited to: state government staff, higher education, community-based organizations, family-led organizations, private businesses, faith-based organizations, health systems, health professional organizations, community coalitions, Tribal MCH programs including WIC, Tribal colleges, and Tribal government. Many of the partners work within all the MCH domains.

Partner organizations were invited to participate in the January 2019 launch of the needs assessment process via a webinar facilitated by the OCFS Needs Assessment Project Team. Partners were also invited to complete a survey which assessed priority health issues impacting families and individuals they work with in SD. Survey findings informed the design of other data collection methods utilized in the needs assessment including a youth survey, community input survey, and focus groups. Partners were also engaged through regional partner meetings.

Other data collection methods partners participated in included a community input survey to provide feedback on priority health issues impacting the MCH population across the state. Partners were asked to share the survey with their own stakeholders and other relevant organizations. After completion of data collection, partners were invited to participate in a webinar to learn about the key findings to inform priority setting by domain. In-person and virtual meetings were held with partners by domain to discuss key findings and identify two priorities to focus on in the 2020-2025 State Action Plan. Subsequent action planning was conducted in collaboration with partners to ensure diverse, meaningful input and collaboration moving forward.

Partners were also kept informed of the needs assessment process through a monthly newsletter devoted to providing information about MCH staff and on-going activities. It was important to be transparent with partners and keep them engaged throughout the entire process. The process provided a foundation to build existing and new partnerships that will be important to coordinate MCH programs and support the health and well-being of families and individuals served.

Families and Individuals

Engagement of families and individuals was identified as a key component of the needs assessment process early in the planning stage. It was important to inform an understanding of health and well-being issues directly from families and individuals experiencing them. Input was elicited from families and individuals supported by OCFS programs and partner organizations through a community input survey, youth survey, and focus groups. Efforts were made to engage underserved populations disproportionately affected by health and well-being issues, including American Indian, low-income, youth, and rural populations. Partner organizations were integral to support engagement of families and individuals in this process, particularly in communities where OCFS staff and programs did not have a footprint.

Quantitative and Qualitative Methods

Comprehensive quantitative and qualitative data collection methods were utilized to assess population health status and issues that impact families and individuals (e.g. women, infants, children, and adolescents, including those with special healthcare needs and underserved populations) across SD, as well as to assess the capacity of OCFS partner organizations and OCFS staff who serve families and individuals across the state. Quantitative and qualitative methods utilized included a partner survey, regional partner meetings, community input survey, youth survey, focus groups, and fall partner meetings.

The OCFS Partner Survey was a preliminary survey designed to elicit quantitative and qualitative input from partner organizations regarding priority health and wellbeing issues that impact families and individuals they serve. The survey was developed based on existing MCH indicator data and priority health issues. Partners were also asked to share contact information for other partners who could help inform the needs assessment. The survey was disseminated electronically and informed the scope of future data collection efforts including the youth and community input surveys, regional partner meetings, and focus groups. The full report is available in application supporting documents.

Partner meetings were held in five regions across the state with a total of approximately 100 partners to discuss unique health and well-being needs of women, infants, children, and adolescents, including those with special health care needs. SD is a geographically diverse state, shaped by rural and urban communities, nine federally recognized American Indian tribes, and unique issues that impact each of these areas. To foster stakeholder engagement, it was integral that OCFS took the opportunity to engage partners in their communities and gather qualitative data.

The Youth Survey was a key data collection method used to elicit feedback from SD youth for the first time in an MCH needs assessment. This survey elicited input from 659 SD youth, grades 5-12, regarding priority health issues affecting them, including health problems, access/use of healthcare, substance use behaviors, bullying, sexual education and health, and prevention behaviors. The survey was disseminated electronically to partner organizations who serve youth, as well as via hard copy at local and state conferences targeted at SD youth. The full report is available in application supporting documents.

A Community Input Survey was a key data collection method used in the needs assessment process to seek input from community members and partners important to the process. The survey elicited input from 1,020 SD families and individuals served by OCFS programs, OCFS partner organizations, as well as concerned parents, parent/guardians of children with special health care needs, community service providers, educators, health care providers, policy makers, tribal government, and government employees who support these populations. The full report is available in application supporting documents.

Focus groups were held in four SD communities with unique populations, including women living on an American Indian reservation, co-parenting adults in a rural community in northwestern SD, single parents in eastern SD, and youth in southeastern SD. The focus groups were held to capture in-depth feedback on the health and wellbeing issues that impact families and individuals in rural and underserved communities. A summary report can be found in the application supporting documents.

Data sources utilized to inform the needs assessment included regional partner meetings, secondary data, MCH indicator data, as well as state and federal performance measures. Needs assessment data informed shared decision-making by partners and OCFS staff to identify preliminary priority needs of women, infant, children, CYSCHN, and adolescents served by the MCH program and partners. The Needs Assessment Project Team and key OCFS Advisory Committee members met in December 2019 to finalize priorities for each domain based on the needs assessment data. Each domain leader outlined chosen priorities, possible partners, suggested evidence-based strategies and how the priorities might align with National Performance Measures (NPM) or State Performance Measures (SPM). After discussing the priorities identified through the needs assessment process, the group chose NPMs and SPMs that align. Facilitators were then chosen to lead each NPM/SPM workgroup which would include external and internal partners. Each NPM/SPM facilitator met with new and existing partners to begin looking at strategy development to form the State Action Plan.

In February 2020, members of the Needs Assessment Project Team and OCFS Advisory Committee participated in Evidenced-Based Decision-Making training using Results Based Accountability framework provided by John Richards, Strengthen the Evidence for MCH Programs and Oscar Fleming, National MCH Workforce Development Center. The technical assistance provided an opportunity to create an evidence-based action plan using Evidence-Based Strategy Measures (ESM) that advance NPMs. During the training attendees analyzed the story behind the data, identified partners and what role they play, and discussed what works and what resources and activities we need to address the problems. The full Needs Assessment Report can be found here 2020 Title V Needs Assessment Report. 

Women/Maternal Health: Findings from the needs assessment revealed many notable strengths and needs in women/maternal health. Feedback elicited from partners at the regional partner meetings recognized strengths including workforce development programs, available data, access to healthcare services, the 211 Helpline, community programs, and existing partnerships and collaboration between agencies that promote health. Needs identified specific to women/maternal health largely centered on social needs, mental health, and substance abuse, as well as access to healthcare services.

Input from the regional partner meetings, along with qualitative data from the community input survey and focus groups revealed some challenges and gaps for all women. Social needs, including lack of transportation, joblessness or having a job that does not meet the family’s needs, lack of education, and poor housing conditions were noted gaps in women/maternal health outcomes. Data also revealed gaps in access to healthcare services and providers, lack of sexual health education, lack of cultural awareness and the need for improved advocacy around women’s health issues (DOH, 2019).

Women’s mental health and substance abuse were common themes across the state. Focus group participants were concerned about gaps in counseling services and underutilization of available services due to a lack of awareness and confidentiality. Participants also identified concerns around substance abuse, especially methamphetamine. Findings from the community input survey indicated that access to mental health services and substance abuse prevention and treatment were ranked among the top six priorities. Specifically, women who were married, who had a higher income, and were white or a race other than American Indian stated that access to mental health services was more likely to be an unmet need than women who were not married, who had a lower income, and were American Indian. While the MCH program has had limited success in increasing the number of women ages 18-44 who received a well-woman, preventative medical visit each year, SD did report a higher rate of visits in 2018 compared to the national average (77% vs. 74%, respectively). Needs assessment findings indicate the importance of such a visit as a care coordination and referral starting point for women.

Maternal attitudes and behaviors of SD mothers also reflects challenges and gaps in morbidity and health risks as outlined in 2018 PRAMS data, including:

• 67% of mothers statewide reported drinking alcohol 3 months before pregnancy, and 8% reported drinking alcohol the last 3 months of pregnancy.
• 25% of mothers statewide reported smoking the 3 months before pregnancy and 10% smoked the last 3 months of pregnancy.
• 16% of women reported depression 3 months before pregnancy, 17% reported it during pregnancy, and of those that had a postpartum visit, 13% reported symptoms indicative of postpartum depression.
• Women that were enrolled in the SD WIC program were more likely than those not enrolled in WIC to have depression during pregnancy (26% vs. 13%) and score high on indicators for postpartum depression (21% vs. 10%) (SD PRAMS, 2018).

Current efforts to support women/maternal health include: 1) partnering with Title X and Maternal, Infant, and Early Childhood Home Visiting (MIECHV) program to promote the well-woman visit, 2) partnering with the WIC program to increase the number of well-woman visit referrals made, and 3) working with one of the major insurance companies in the state to send out a reminder letter regarding well-woman visits to women of childbearing age, an evidence-based strategy.

The OCFS has not formally addressed the mental health status of its clients in community health offices across the state. However, opportunities to implement new strategies, as well as enhance the current strategies can better support this effort, ensuring an emphasis on health equity. New strategies to address this priority using MCH funds will include: 1) implementing an evidence-based behavioral health screening tool to be utilized in all OCFS sites; 2) creating a toolkit of evidence-based resources on maternal mental health/substance abuse to support referral; 3) training OCFS field staff on recognizing the symptoms of perinatal depression; and 4) the use of the selected screening tool and when/how to refer. Developing new partnerships with multi-sector, diverse partners to help address this priority need will also be key to equitability supporting women across the state, including underserved and vulnerable populations.

Adolescent Health: Notable strengths in the adolescent health domain include the following: the availability of community resources, activities, and recreational opportunities; training resources; collaboration across youth programs and non-profit organizations; youth led groups; and telehealth. Despite these identified strengths there are additional needs specific to adolescent health including a focus on mental health, substance abuse, sexual health, and health behaviors.

Much of the data identified in the needs assessment highlights poor outcomes for adolescents in SD. Specifically, both adolescent mortality and adolescent suicide rates for 10 through 19-year-olds in 2017 were some of the highest in the country at 51.7 per 100,000 and 30.0 per 100,000, respectively (DOH Vital Statistics, 2017 and MCHBG Annual Report, 2019). In addition, the youth survey identified the top five health concerns among youth age 11-18 as: 1) suicide, 2) bullying, 3) substance abuse, 4) sexual health, and 5) physical activity and nutrition. Survey data also indicated that youth felt that resources were lacking in the areas of mental health, reproductive or sexual health, and substance abuse treatment and prevention. Sexual health and suicide prevention were the two top priorities consistently noted throughout the needs assessment process (DOH, 2019).

The community input survey found similar unmet needs among the adolescent age group. Thirty-nine percent of respondents felt that access to mental health services was an unmet need. Life skills training, substance use prevention and treatment, youth voice in decisions affecting them, and safe and affordable housing were the other unmet needs with the greatest number of responses. Individuals with lower income and American Indian respondents were more likely to report that the lack of a youth voice was an unmet need among adolescents, while higher income and white respondents were more likely to state that access to mental health services was a greater need adolescents (DOH, 2019).

The youth survey asked whether participants would take a sex education course if one were offered in their community, including whether they had taken a course before. Of the participants that had already taken a sex education course, 52% of them said that they would take another class. Of those that had never taken a sex education course, 69% said that they would take a class. This reinforces a gap in education, as well as a challenge to identify how sexual health education can be offered (DOH, 2019).

Eighty-four percent of youth that responded to the Youth Survey identified suicide as one of their top five health concerns. Seventeen percent of respondents said that they had seriously considered attempting suicide. Depression and suicide also surfaced as two main mental health concerns in the adolescent focus group. Focus group participants thought that bullying and lack of healthy coping mechanisms for stress contributed to the suicide epidemic.

The following data describes the health status of adolescents in SD as it relates to suicide:

• American Indian children have disproportionately higher hospitalization rates due to attempted suicide-related injuries and the rate differences between American Indian and white children are increasing over time. Injury hospitalization rates among females has increased more rapidly and now surpasses that of males (Bai W, Specker B. Racial differences in hospitalizations due to injuries in South Dakota children and adolescents. J Racial Ethnic Disparities 6:1087, 2019).
• Adolescent suicide rate for age 15 through 19 was 29.2 per 100,000 from 2016-2018.
• Adolescent suicide rate by race and sex for ages 10-19 is shown below. White females have the lowest rate of suicide at 2.5 deaths per 100,000 while American Indian females have the highest rate at 80.2 deaths per 100,000 (South Dakota DOH, 2018).

While there are notable challenges for the adolescent domain there has been some success in addressing the needs of adolescents across the state. Specifically, data gleaned from the Youth Survey provides current baseline data specific to youth. Until now, the most recent source of youth data used to inform the adolescent health domain is from the Youth Risk Behavior Survey in 2015. New partnerships have also been established with organizations serving youth, which helps expand the reach and impact of adolescent health services and program. In addition, improvements have been made in youth immunization rates and teen birth rates. Teen birth rate for ages 15 to 19 has decreased each year from 2013 to 2018 while youth immunization rates have increased for meningococcal conjugate, Tdap, HPV, and seasonal influenza from 2017 to 2018 (DOH Vital Statistics, 2018). Moreover, we have seen an increase in the number of teachers, physicians and nurses trained in a youth suicide prevention course.

Suicide and sexual health have been on-going issues for all ages in South Dakota, but the data highlights enhanced strategies and activities are needed specific to adolescent health, including an emphasis on health equity. The MCH program will enhance services for this population and align resources related to health, wellness, and education on topics such as suicide, mental health, and sexual health. A core protective factor for both sexual health and suicide prevention are healthy relationships in adolescence. Adolescence is a time for young people to explore and develop relationships by connecting with peers, parents, teachers or a romantic partner. Relationships might be unhealthy or healthy and can be emotional, physical or sexual. A need to educate parents and adolescents on what services are available in their local communities and when to utilize services was identified during the needs assessment.

Outreach to existing statewide programs and new multi-sector partners will be important to learn from and build on their successes. By fostering these partnerships, the MCH team will begin to provide a platform to address healthy relationships in adolescent and suicide prevention. In addition to learning about current programming, the MCH program needs to identify culturally appropriate strategies and services for American Indian adolescents who are disproportionately affected by these issues.

In an era where social media plays a large role in adolescent lives, enhanced strategies to address health through social media will be key. The youth survey showed that social media was one of the top three sources of health information for 48% of youth. As a result, DOH has been developing the Cor Health SD platform. Cor Health SD is a social media platform using Instagram and Facebook to provide educational messaging to young people and their parents. New social media messaging will be developed to enhance content shared through this platform.

The MCH program foresees an opportunity to provide programs that will include a diverse youth voice to not only assure that we are meeting the needs of SD youth but working alongside them to improve health outcomes. Beyond creating Cor Health SD, the MCH program has identified a need to develop a youth council to ensure the youth voice is included in future programming efforts.

Child Health: Strengths identified within the child domain include statewide programs and partnerships; data sharing between programs and partnerships; healthcare and dental services; cultural diversity and tribal sovereignty; resources such as food pantries and homeless shelters; mental health services; and telehealth. The community input survey noted needs included: safe and affordable housing; parenting education and support; affordable health insurance; substance use prevention and treatment; and access to healthy foods. Unmarried individuals and individuals who earned a low income stated that affordable housing was a need for improving child’s health, while white respondents and respondents who reported a higher income stated that parenting education and support was the greatest unmet need. However, parenting education and support was a recurring theme with all demographics throughout the needs assessment. Qualitative feedback identified that parents want more education on topics ranging from growth and development of children to nutrition and cooking healthy meals. Lack of knowledge of available resources was commonly stressed as a barrier to achieving wellness. One respondent stated that “resources for single fathers” would be an asset (DOH, 2019).

Specific gaps identified regarding child health include: limited healthcare and dental workforce capacity; access to services (especially in rural areas); lack of policy and regulation for seat belt use; lack of daycares and preschool standards; lack of resources for parents or lack of knowledge how to access these; transportation; parenting skills/education; cultural competency; and mental health and substance abuse resources and services.

The MCH program identified opportunities to expand and enhance current efforts to support child health with an emphasis on health equity. Specifically, the program will review possible enhancements on developmental screening in the areas of promotion and staff education. The OCFS field staff has been instrumental in administering Ages and Stages Questionnaires (ASQ) as well as ASQ Social Emotional (ASQ SE) questionnaires across the state. The MCH program will continue to support Community Health Offices to administer these screenings by providing continuing education opportunities for staff, as well as strengthening the tracking and referral pathways for children with an identified need based on screening results. The SD MCH program has successfully partnered with the Learn the Signs, Act Early campaign to provide training and technical assistance to local Community Health Offices, as well as with the Part C (Birth to Three) program at both state- and local-levels for guidance on referring children with a developmental need.

The MCH program will focus efforts expanding partnerships to identify and address gaps in parenting education and support. Specifically, the program will explore ways to partner with Medicaid to look at ASQ reimbursement rates and well-child data to help identify gaps and collaborate on new activities to address these gaps.

Infant/Perinatal Health: Strengths identified within the infant domain included: programs such as Birth to 3, Cribs for Kids, and WIC; and the partnerships between statewide agencies that serve this population. South Dakota’s percent of low birth weight infants and percent of preterm deliveries continues to remain lower than the national average. In 2017, the percent of low birth weight deliveries was 6.9% compared to 8.3% nationally, and the percent of preterm births was 9.3% in South Dakota compared to 9.9% nationally (DOH Vital Statistics). However, priorities that still need to be addressed regarding infant/perinatal health include social needs, access to health care services, mental health and substance abuse, and childcare.

South Dakota’s successes in Infant/Perinatal Health have been shown with the percentage of infants placed to sleep on their backs (87%, ranked 4th out of 31 states) and on a separate approved sleep surface (41.6%, ranked 1st of 31 states) (SD PRAMS, 2018). Some of the gaps that were identified through the needs assessment process included: social needs, such as transportation and affordable housing; policies that hinder data sharing; lack of Medicaid Expansion; a need for more parent education and life skills training; mental health and substance abuse treatment for mothers; access to health care services and care (specifically specialty care); affordable and accessible childcare; and cultural stigma. Another notable gap identified for the infant domain is continuing education and programming around infant sleep. Although SD’s infant mortality rate has been steadily declining, the post neonatal and Sudden Unexpected Infant Death (SUID) mortality rates remain high. Data on infant mortality and sleep addresses a gap in care and the need for continued interventions:

• In 2017, the post neonatal mortality rate for infants was 2.2 deaths per 1,000 live births, compared to the national rate of 1.9.
• In 2017, the sleep-related sudden infant death (SUID) rate was 115.4 deaths per 100,000 live births, compared to the national rate of 93.0.
• In 2017, the infant mortality rate was 7.7 per 1,000 births, compared to the national rate of 5.8 (DOH Vital Statistics, 2017).
• Based on data from SD’s Infant Death Review (2014-2018), 70% of infant deaths (post hospitalization) occurred in an unsafe sleep environment (DOH, 2018).

The MCH program has collaborated with partners to support implementation of programs specific to infant/perinatal, including the Association of American Retired Persons to educate grandparents on safe sleep guidelines; tribal MCH programs to provide safe sleep environments to native families in need; and East and West River Death Review teams to provide prevention recommendations to keep infants safe. However, information elicited in the Needs Assessment process identified opportunities to build and foster new partnerships to collaborate on programs and strategies that address infant/perinatal health. Specifically, new partnerships established in the process with the SDSU Extension Services, Sanford Health, Department of Social Services’ Policy Strategy Department, and the Center for the Prevention of Child Maltreatment will be fostered to support implementation of key strategies. New strategies to address the post neonatal and SUID mortality rates include: safe sleep radio advertising in tribal communities; collaborating with the Safe Passage research team on culturally appropriate safe sleep education tools for Indigenous populations; and forming a statewide prevention focused committee to turn death review data into action. All these strategies will be addressed with an emphasis on health equity.

Children and Youth with Special Health Care Needs (CYSHCN): Strengths in the CYSHCN domain were identified in a 2018 survey that was conducted by the DOH and SDSU to identify needs and gaps in services for families of CYSHCN in SD. Among survey respondents that have access to family-centered care, 64.8% of families of CYSHCN reported feeling like a partner in their child’s care, 69.3% reported receiving care that was sensitive to their family’s values and customs, 66.9% felt their provider listens carefully to them, 63.7% felt their provider spends enough time with their child, and 65.9% reported receiving specific information they need from their provider for their child. Despite the noted strengths, the survey also revealed the unmet needs faced by CYSHCN and their families. These include difficulty in paying medical bills; distance to medical care; difficulty with scheduling or long waits for appointments; lack of insurance coverage or denial of service; and missing school and work for appointments.

South Dakota’s successes in CYSHCN are seen in the 2017-18 NSCH data, which revealed SD is ranked 3rd in the nation for percent of children with special health care needs having a medical home, with a percentage of 53%, compared to the U.S. rate of 43% and significantly greater than SD’s 2016-17 rate of 50%. SD is also seeing an increasing trend in the percentage of CYSHCN who report receiving care in a well-functioning system, with a slight but significant increase from 15.6% in 2016-17 to 16.3% in 2017-18 (NSCH).

Some challenges and gaps in the care of CYSHCN were also identified. Data from the 2018 DOH-SDSU survey indicated that among families of CYSHCN, only 52% received effective care coordination services compared to 62% nationally, 28% reported difficulty getting a needed referral for health care services compared to 26% nationally, and only 43% reported receiving care in a medical home, similar to the national rate. Other challenges identified in the survey included costs of care, distance to medical care, difficulty with scheduling or long wait times for appointments, lack of insurance coverage (or denial for service) and missing school or work for appointments.

The top five unmet needs identified in the community input survey among CYSHCN include: access to specialists (46%), lack of transition care (33%), parenting education and support (33%), communication between support services and health care providers (32%), and access to mental health services (24%). Parenting education and support was a greater unmet need according to higher income versus lower income individuals. A higher percent of American Indian respondents noted that lack of transition care was a greater unmet compared to white respondents (48% vs. 30%, respectively). These data highlight gaps in resources, services, and programs to address priority needs of the CYSHCN population (DOH, 2019).

Improving access to care and services for the CYSHCN population has been an ongoing priority of the SD CYSHCN program. Current efforts to address this need have been primarily focused on direct service reimbursement through the Health KiCC Program, which covers the cost of medical care, medications, and medical equipment for eligible families enrolled in the program. However, this approach only addresses a financial need and does not address the other unmet needs relating to accessing care and services, including distance to medical care, difficulty scheduling appointments, and missing school and work for appointments.

In order to more effectively address all the identified needs of this population, the CYSHCN program has been phasing out the Health KiCC Program over the past five years in order to focus time and funding on the development of new programs that will serve SD CYSHCN population statewide. The 2018 DOH-SDSU survey as well as the community input survey highlighted needs that can be addressed through expansion of diverse care coordination programs. Programs that can serve CYSHCN with very complex medical conditions that need better access to specialists that address mental and behavioral health will be the focus. A strategy to explore additional options of care coordination that can address the varied needs identified has been put in place for the next block grant cycle.

Key partnerships have been successful to address the needs of CYSHCN. Special needs car seats are being provided to families in need through a partnership with DSS Child Safety Seat Distribution Program. Through a contract with the Department of Human Services Respite Care Program, respite care is provided to families of CYSHCN across the state. The CYSHCN program also has a contract with Sanford Children’s Specialty Clinic which provides operating costs to support clinics that provide a geneticist and genetics counselor to Rapid City eight clinic days per year. Strategies to enhance these partnerships include adding representatives from each partnership to the CYSHCN workgroup to collaborate on new ideas and ways we can enhance these existing partnerships and programs.

The CYSHCN program will also enhance current strategies to support coordination of the newborn screening program. SD’s Newborn Screening panel is mandated by state statue and provides direct services that decrease infant morbidity and mortality in the state. MCH funding supports a newborn screening coordinator and contracted partnerships with the State Hygienic Laboratory at the University of Iowa and with Sanford Health. The State Hygienic Laboratory conducts testing on all newborn screening specimens for the state. Sanford Health provides the services of a follow-up nurse for out of normal range results, genetic counseling, and medical consultations

The DOH is an executive agency within state government. The Division of Family and Community Health (FCH) is the public health service delivery arm of the DOH and administers MCH services. FCH consists of three offices; Disease Prevention Services, Chronic Disease Prevention and Health Promotion, and the Office of Child and Family Services (OCFS). The MCH program is part of the OCFS.

Women/Maternal Domain:  One facilitator coordinates the state action plan activities for NPM #1 along with multi-sector workgroup members. Services for women provided with MCH funds include:                                    

• Modified case management of high-risk pregnant women (not covered by Medicaid)
• For Baby’s Sake website and Facebook page – information promoting healthy moms and healthy babies
• Developing and implementing maternal mortality prevention plans in Community Health Offices across the state
• Postpartum home or office visits (mothers not covered by Medicaid)
• Prenatal education/counseling for pregnant moms

Perinatal/Infant Domain: One facilitator coordinates the state action plan activities for NPM #5 along with multi-sector workgroup members. Services for infants provided with MCH funds include:                               

• Developing and implementing infant mortality prevention plans in Community Health Offices
• Newborn home or office visits (mothers/infants not covered by Medicaid)
• Cribs for Kids safe sleep kit distribution/safe sleep education for parents/caregivers
• Statewide Infant Death Review

Child Domain: One facilitator coordinates the state action plan activities related to NPM #6 along with multi-sector workgroup members. Services for children provided with MCH funds include:                               

• Ages and Stages Developmental Screening and related education, counseling, and anticipatory guidance for infant caregivers. Referrals as needed.
• Ages and Stages Social and Emotional Screening and related education, counseling, anticipatory guidance for infant caregivers. Referrals as needed.

Adolescent Domain: One facilitator coordinates the state action plan activities for NPM #10 and SPM #2 along with multi-sector workgroup members. Services for adolescents provided by MCH funds include:

• Program collaboration on a variety of activities as part of interagency workgroups and community-based programming designed to promote health, prevent disease and reduce morbidity and mortality among children and adolescents including abstinence, school health guidance, drug/alcohol prevention, rape prevention, and intentional/unintentional injury prevention.

CYSHCN Domain: One facilitator, the CYSHCN Director, coordinates the NPM #11 state action plan. As the direct reimbursement program, Health KiCC, is being phased out, the CYSHCN program has concentrated on a new care coordination model with Sanford Children’s Hospital in Sioux Falls through a registered nurse care coordinator. This program is in its pilot year and addresses the need to improve access to specialists, decrease travel costs, and provide a medical home for CYSHCN. Additionally, the CYSHCN program partners with DSS to provide special needs car seats, DHS to provide respite care to families, and Sanford Health to provide genetic outreach clinics for the western half of the state. When a family applies for social security disability benefits for a child under age 21, the CYSHCN program provides the family with a list of programs and services they may be eligible for. The CYSHCN Director also sits on the SD Council on Developmental Disabilities whose mission is to assist people with intellectual and developmental disabilities and their families in achieving the quality of life they desire through advocacy and systems change. 

The Newborn Screening program identifies babies who may have a metabolic disorder and alerts the baby's physician to the need for further testing and special care. SD currently screens for 29 disorders either pursuant to statute or administrative rule. This program also works with hospitals to encourage screening of newborns for hearing loss prior to hospital discharge or by one month of age.

Other programs within OCFS serving the MCH population include the South Dakota Family Planning Program (SDFP), the WIC program, and the Bright Start program.

The OCFS provides leadership and technical assistance to assure systems are promoting the health and well-being of women of reproductive age, infants, children, and youth, including those with special health care needs and their families. OCFS provides oversite to state-employed nurses, nutrition educators and dietitians for the provision of public health services in the state. This includes 193 field staff, in 7 geographic regions, and 10 Central Office staff. Linda Ahrendt, M.Ed is the OCFS and Title V Administrator and has been with the DOH for 20 years. Jennifer Folliard, MPH RDN is the OCFS Assistant Administrator and MCH Director and has been with the DOH for 5 months. Whitney Brunner, BS serves as the CYSHCN Director and has been with the DOH for 1 year. Other MCH team members and internal partners include:

• Rhonda Buntrock, OCFS Assistant Administrator-WIC program Administrator
• Peggy Seurer, OCFS Assistant Administrator – Public Health/Clinical Services
• Carrie Churchill, Home Visiting Program Manager
• Lauren Pierce, Newborn Screening Coordinator
• Sara Gloe, South Dakota Family Planning (SDFP) Program Nurse Manager
• Emily Johnson, SDFP Nurse Consultant
• Jill Munger, MCH Women/Infant Coordinator/Child Death Review
• Sarah Barclay, MCH Child/Adolescent Coordinator
• Taylor Pfeifle, Women’s Health Consultant, Maternal Mortality Review
• Tim Heath, Immunization Program Director
• Mark Gildemaster, Data Statistics Manager
• Katelyn Strasser, MCH Epidemiologist
• EA Martin, SDSU contractor, MCH and home visiting epidemiology
• Derrick Haskins, DOH Communication Director

The DOH contracts with an epidemiology team and has a designated MCH epidemiologist to continually analyze available data and develop fact sheets/articles based on their findings. The MCH programs also continues to improve its website content and works with a media contractor to grow and shape MCH communications and marketing efforts cross the state.

MCH domain leads provide training and ongoing technical assistance to DOH field staff as well as private healthcare providers who deliver MCH services and programs. The MCH team works closely with field staff on data collection for federal and state reports and program evaluation.

Title V programs have built strong partnerships both within and outside the DOH to collaborate on key programs and initiatives that impact priority populations. The physical presence of the OCFS 76 community health offices serves as a major asset throughout the state. These offices carry out coordinated programs, services, and outreach that are funded through a variety of federal, state, and local public health funding streams. These offices serve as the “local” health department and in many rural and underserved communities this “staying” power builds trust and partnerships.

Opportunities to strengthen partnerships lie with three groups: community-based and faith-based organizations that are directly supporting priority populations; nine American Indian tribes within the borders of SD; and family engagement organizations to expand the reach of Title V investments which aim to improve health and wellbeing of SD families. Strategies will be developed and prioritized in the action plans for the coming year to sustain or cultivate engagement. Specific health equity partnership development strategies will be assessed on utility and feasibility.

Throughout the needs assessment process, 27 long standing partners were identified representing all sectors including tribal health systems and programs. Most of these partnerships are defined as “formal” meaning they have a contract, MOU or historical working relationship with the DOH. The MCH team also identified 17 emerging partners, the vast majority of whom were informal (meaning non-typical) partners that represent emerging needs. These partners tended to represent the infants, children, and adolescent domains.

Maternal Child Health Bureau Investments: Bright Start Home Visitation Program includes OCFS as both grantee and implementing agency for the MIECHV program. Bright Start uses the Nurse Family Partnership (NFP) model in eight sites covering over 14 counties in SD. The Bright Start Home Visitation Project Director will be actively engaged with the workgroup implementing strategies under NPM 1 and NPM 5. The State Systems Development Initiative (SSDI) grant was awarded to SD in 2020 that coordinates with and directly supports the work of the MCH Title V Block Grant. SD’s SSDI grant supports an epidemiologist focused on maternal and child health, the South Dakota PRAMS, and facilitation of the identified SPM to better coordinate and disseminate data.

Other Federal Investments Administered in the DOH OCFS: South Dakota MCH populations are also supported, and SD’s MCH Block Grant reach is expanded through additional grants within the broader OCFS.

Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) serves participants through 76 community health offices across the state. The program works cooperatively with the Cheyenne River, Rosebud Sioux and Standing Rock tribal reservations to ensure every county in South Dakota has access to WIC services. From October 2018 to September 2019, WIC served an average of 14,896 participants per month.

Rape Prevention Education Grant (RPE) aims to decrease sexual violence by funding community-based organizations who use the public health approach to decrease sexual violence risk factors and increase sexual violence protective factors. The Sexual Violence Project Specialist for the South Dakota Network Against Family Violence and Sexual Assault will engage as an active partner on SPM 1 workgroup.

Office for Victims of Crime Rural Sexual Assault Nurse Examiners (SANE) is utilized statewide to increase the opportunity for victims of sexual assault across rural SD to receive services in their communities and increase awareness of law enforcement services. The project director for both RPE and SANE grants will be actively engaged on the work group implementing strategies under NPM 1 and SPM 1.

State Personal Responsibility Education Program (PREP) is delivered through a partnership with Lutheran Social Services. PREP is being utilized statewide to educate young people on abstinence and use of contraception to prevent pregnancy and sexually transmitted infections, including HIV/AIDS. SD’s program goals are to lower both Chlamydia rates and teen birth rates among young people. The LSS Project Director for PREP will engage as an active partner on the SPM 1 workgroup.

Title V Sexual Risk Avoidance Education (SRAE) is administered through a partnership with LSS and Boys & Girls Club, SRAE is utilized statewide to educate young people on sexual risk avoidance and teaches youth to voluntarily refrain from non-marital sexual activity. The target population is 10 – 13-year old who are considered vulnerable youth. The goals of this program are to lower both Chlamydia rates and teen birth rates among young people in SD. The LSS Project Director and Boys and Girls Club Program Coordinator will engage as an active partner on the SPM 1 workgroup.

SD Family Planning Program (SDFPP) delivers statewide services through a network of 23 sites and provides services to low income individuals to increase healthy maternal/infant outcomes. The Title X Project Director will be actively engaged with the workgroup implementing strategies under NPM 1.

Major Health Systems: Sanford Health, Avera and Monument Health, partner with MCH program staff to provide a variety of services including coordinated case management services and genetic counseling. Sanford Health provides the one children’s specialty clinic in the state and works closely with the State’s Newborn Screening Coordinator to coordinate newborn screening follow up and case management services. These health systems have representation on workgroup implementing strategies to address NPM 5 and NPM 11.

Other State Government Agencies: South Dakota Department of Social Services DOH has an MOU with SD Medicaid to provide direct healthcare services and modified case management within the 76 community health offices. The DOH and Medicaid have also established an interagency collaborative over the last year. The focus of this partnership is across all MCH domains. DSS Behavioral Health and the DOH began working together to merge resources on suicide prevention and promoting DSS’ youth suicide prevention campaign - BeThe1SD. They will engage as a new active partner on NPM 7.2 workgroup. South Dakota’s Office of Emergency Management partners with DOH’s Office of Public Health Preparedness and Response (PHPR) and OCFS in providing emergency response efforts across the state. OCFS field staff in community health offices are assigned to a Point of Dispensing (POD) site to dispense emergency pharmaceuticals in the event of a public health emergency. 

Other Programs Within the DOH: Infant Death Review (IDR), through a (MOU) between DOH and member agencies, volunteer professionals across the state conduct IDR. Two regional teams, East and West River, are made up of members from law enforcement, DSS Child Protection Services and Behavioral Health, DOH, hospital staff, fire departments, Emergency Medical Services (EMS), Forensic Pathology, Division of Criminal Investigation (DCI), Bureau of Indian Affairs (BIA), IHS, Great Plains Tribal Chairman’s Health Board, and the States Attorney’s offices. DOH’s Office of Data, Statistics and Vital Records provides data for the review process. IDR is funded exclusively by MCH dollars.

Tribes, Tribal Organization and Urban Indian Organization: Maternal and child health services are provided in a variety of ways. A few of those include partnerships with DOH; dedicated staff within a tribe; and through a partnership with the Great Plains Tribal Chairman’s Health Board. Tribal MCH Programs are informal, but long-standing, partnership with Rosebud IHS and Tribal MCH and Cheyenne River Sioux Tribal MCH are in place to provide safe sleep environments to American Indian families in need each year. The needs assessment team also noted an emerging partnership with the Sisseton-Wahpeton Oyate MCH staff, who will serve on the workgroup addressing NPM 1.Great Plains Tribal Chairman’s Health Board (GPTCHB) offers public health support to s that share borders with North and South Dakota, Nebraska and Iowa. GPTCHB provides MCH services which include direct service, research, epidemiology, and technical assistance. This organization will be part of the workgroup addressing SPM 2.

Public Health and Health Professional Education Programs/Universities: SDSU Population Health Center is a formal, long-standing partner that provides technical assistance to the MCH team to develop, monitor and evaluate the program’s overall objectives. They assisted with the development, execution, and evaluation of the Needs Assessment and will continue to provide technical expertise but will also serve on the workgroup that will direct State Performance Measure 2. USD Sanford School of Medicine (SSOM) and the MCH program have fostered a partnership as a formal and emerging partner who now leads the state’s Early Hearing Detection and Intervention collaborative. Previously the DOH led this grant. USD also houses the state’s medical school and along with SDSU jointly houses the state’s only public health program.

Community-Based Organizations: The HelpLine Center is a nonprofit organization that offers youth suicide prevention education and activities throughout the state. With this partnership the following activities are offered: 24/7 statewide crisis line – updating the database of mental health providers and emergency services in order to provide quality referrals. They will engage as an active partner on the NPM 7.2 workgroup.

A structured and inclusive priority-setting process was shaped by collaboration with the MCH Impact Team and OCFS partner organizations. The Needs Assessment Project Team analyzed findings from quantitative and qualitative data and developed a priority setting tool to help select preliminary priority needs by domain (women, infant, children, adolescent, and CYSHCN). Based on the data findings, the number of priority needs varied from 10 to 13 for each population domain. Each priority need was scored on a five-point scale. Criteria included significance to public health, ability to impact the issue, and capacity to address the issue.

Each tool was first disseminated to the MCH Impact Team to assist with narrowing down the priority needs prior to engaging partner organizations. Additional priority setting methods were utilized with partner organizations to help further narrow down priorities and ensure a collaborative and inclusive priority-setting process. Partner organizations, the MCH Impact Team, and the OCFS Advisory Committee were engaged in fall partner meetings to support the priority setting process.

Additional in-person/virtual meetings were held by domain (women, infants, children/CYSHCN, and adolescents) with partner organizations, OCFS Advisory Committee members, and members of the MCH Impact Team to identify two key priorities to focus on in the five-year action plans.

Priority needs identified previously were shared with meeting participants to review. The Dot Method was utilized to support priority setting during each domain meeting. Participants voted in two rounds and narrowed priorities down to two for each domain. Priority areas not selected were moved to a parking lot, understanding some of them could still be addressed and/or integrated into strategies within the identified priority areas.

Following the fall partner meetings, the MCH team and other key OCFS program staff met in-person to discuss the priorities identified and narrow down the focus to one priority per domain. This was important to ensure the priorities identified aligned with corresponding NPMs and SPMs. The seven priority needs and their corresponding NPMs and SPMs are listed in the table below.

Other common needs noted across domains included social determinants of health such as employment, housing, and transportation. These did not rank as high as other priorities in the process because the MCH program has limited resources to address these issues. Specifically, OCFS felt that the MCH program should not be the lead on addressing these needs. The OCFS does recognize their importance in the overall health of individuals and will continue to engage partners who can better address these issues.