Caring for a child with special health care needs can be a rewarding and life-changing experience, especially when families and caregivers have appropriate support and access to needed resources. Children and youth with special health care needs (CYSHCN) and their families often face unique challenges as they navigate the health care system. These children may require treatment with multiple specialties, various medications, and use of special medical equipment. Families and caregivers may frequently travel long distances to attend appointments and can suffer significant financial hardship due to treatment costs and time missed from work. Left unsupported, a family may experience emotional distress from trying to manage their child’s healthcare on their own.

The South Dakota (SD) Title V 2020 Needs Assessment identified improving access to care and services as the ongoing top priority for our CYSHCN population. The SD CYSHCN Program aims to create and support programs that provide families with the assistance they need to manage their child’s healthcare, as well as leverage partnerships to carry out planned activities and deliver services to families. The priority was paired with 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 exceeded the 2021 target of 48.9% with 49.4% of children with special health care needs having a medical home in 2020-2021. The new 2022 annual target is 50.5%. South Dakota was ranked 8th in the nation in 2020-2021 and had a significantly higher percentage than the overall U.S. percentage of 42%. 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 did not exceed the 2021 target of 54.7% with 51.7% of children without special health care needs having a medical home in 2020-2021. The new 2022 annual target is 54%. South Dakota was ranked 18th in the nation in 2020-2021 and had a significantly higher percentage than the overall U.S. percentage of 47.7%. The change from the base year (2016) to this year is not significant.

State Objective 1: 

Increase the percentage of CYSHCN who report receiving care in a well-functioning system from 20.9% (2019-20) to 21.2% by 2025 (NSCH). 

State Objective 1 Data Statement: 

In 2020-2021, South Dakota did not exceed the 2021 target of 21% with 19.5% of children with special health care needs receiving care in a well-functioning system. The new 2022 annual target is 20%. South Dakota was ranked 4th in the nation in 2020-2021 and had a significantly higher percentage than the overall U.S. percentage of 13.7%. The change from the base year (2016) to this year is significant.

Strategies:

11.1. Enhance equitable family access to needed supports and services

The Western half of the state is underserved in the area of pediatric genetics testing and counseling. Through a contracted partnership with Sanford Health, the CYSHCN Program assists with operational costs for the Sanford Children’s Specialty Clinic in Sioux Falls, SD to send a geneticist and genetics counselor to Rapid City, SD eight times per year to conduct genetics outreach clinics. In 2022, a total of 22 individuals were served through this partnership.

Families and caregivers often face higher costs when purchasing car seats with the necessary adaptations to safely transport their child/young adult in a vehicle. To assist families with the higher costs, the SD CYSHCN Program, in partnership with the Department of Social Services Child Safety Seat Distribution Program, funded 29 special needs car seats and accessories in 2022. The funds were used to cover the car seat costs for individual families as well as for car seats and accessories that are used as short-term loans by our major health care systems.

Caring for a child with special health care needs can be physically and emotionally demanding for a parent or caregiver. They may need a break to recharge, take care of other family members or tasks, or attend to self-care. In order to provide families and caregivers with much needed rest, the CYSHCN Program, through an interagency agreement, provides financial support to the SD Department of Human Services Respite Care Program. The Respite Care Program authorizes families to receive funding for temporary respite care from a provider of the family’s choosing. The program is available to any family regardless of income with a live-in child or adult who has a developmental delay, disability, emotional disturbance, severe and persistent mental illness, chronic medical condition, or a traumatic brain injury.  The program served 661 individuals statewide in 2022.  

The CYSHCN Program’s direct service reimbursement program, Health KiCC, continues to be phased out while still running for the participants enrolled. In 2022, a total of 9 participants remained in the program. The program operates as a secondary payer and covers remaining expenses after insurance payment for clinic and hospital services, laboratory, medications, and medical supplies. The program also reimburses participants for travel expenses incurred. If a participant is uninsured, the program reimburses services at the Medicaid rate.

The DOH website continues to be remodeled and the CYSHCN Program page continues to be revised to include an accurate listing of the programs and services supported by the CYSHCN Program. The page is located at https://doh.sd.gov/family/childhood/CYSHCN.aspx.

The CYSHCN Director has established and maintained a partnership with SD Parent Connection to help better connect families to resources in our state. The CYSHCN Director ensures all families who contact the office for resources are aware of SD Parent Connection and provides direct contact information.  

The CYSHCN Director serves on many workgroups and councils across the state, including the SD Developmental Disabilities Council, the State Community of Practice team, a child interagency workgroup, a SD Transition Partnership workgroup, the DHS Division of Developmental Disabilities Stakeholder Collective and various other groups by invitation.  These groups are often, but not always, attended by family organizations as well as family and self-advocates and provide a line of communication to hear family perspectives as well as share the work we are doing and obtain feedback.

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

In 2022, the Sanford Patient Navigation Program, in partnership with the CYSHCN Program and South Dakota State University (SDSU) Population Health, completed its second year of implementation and was renamed the Pediatric Complex Medical Care (CMC) Program. The program consists of a Registered Nurse Patient Navigator and a pediatric Certified Nurse Practitioner housed in the Sanford Children’s Hospital in Sioux Falls, SD. The Patient Navigator and Nurse Practitioner provided extensive care coordination services to the first and second cohorts totaling around 56 participants. This number is fluid as patients enter and discharge from the program. The participants were chosen by Sanford based on criteria provided by the CYSHCN Program. The first cohort criteria included the following:

• The participant must be under 18 years old
• Participant must have a very complex medical condition (3 or more systems involved)
• Participant must have Medicaid or be uninsured
• Preference should be given to participants who live further than 100 miles from Sioux Falls

Participants were given the option to voluntarily participate in the evaluation portion of the program, provided by SDSU. A financial incentive was provided to the families for participation in the evaluation. The evaluation portion consisted of a pre and one year post family survey, an affiliated professional survey, and an ongoing evaluation based on a care coordination management tool used by the Patient Navigator and Nurse Practitioner.

Based on feedback received from these surveys, the second cohort criteria was modified to include the following:

• The patient must be under 18 years old
• Participant must have a complex medical condition (does not need to involve 3 or more systems)
• Participant must have Medicaid

In addition to the above criteria, the preference for families living further than 100 miles from Sioux Falls was dropped as it was noted most families of children with complex medical conditions receiving extensive care at the Children’s Hospital have relocated to the Sioux Falls area. By dropping this preference, the Sanford team was able to focus recruitment where they saw the most need, as opposed to giving geographical preference. Additional income verification measures were put in place in 2022 and subsequently dropped as they created too many barriers to get families the services they need. Lastly, the second cohort had a higher percentage of children under 5, as families expressed a greater need for navigation services early on in their journey with their child through the healthcare system.

Recruitment, retention, and surveying of the second cohort was met with some challenges. The RN Patient Navigator position turned over in 2021 prior to the start of the Nurse Practitioner. The position remained vacant for several months and the program was carried on by a combination of nurses and social workers on staff. Recruitment was paused at this time. When a new RN Navigator was brought on, recruitment slowly resumed, but took time as the navigator became acquainted with the existing participants and the level of care they needed. When the Nurse Practitioner came on board in December 2021, recruitment really picked up and the program began to thrive again. Due to the months of program staff vacancy, the participants included in the second family survey report had been in the program for various lengths of time, ranging from 1 to 2 years. However, the same process was followed, and families were surveyed at enrollment and again after 1-2 years in the program, as we wanted to give those families that joined after the vacancy a full year of services received from the RN Navigator prior to filling out a post survey.

The second cohort post survey was completed in the early spring 2023 and had an 85.4% response rate from the participants. Most notable results included:

• Families meeting criteria for receipt of care in a medical home went from 14.6% at enrollment to 25.7% at the time of post survey.
• Parental awareness of a shared plan of care went from 24% aware of their child’s shared plan of care at enrollment to 68% aware at one year.
• Nearly 65.9% of families reported they have not received the extra help with care coordination they need at enrollment. At post survey, no families reported a need for extra help that was not received.

Families Meeting Criteria for Receipt of Care in a Medical Home:

Parental awareness of shared plan of care:

Comments from families about the program:

• “I am very happy that this hospital has a care team for patients with multiple doctors. It eases the stress on me and helps me organize appointments with people that care. I am grateful for their help!”
• “Right now, I am happy with (child)’s care team and have no complaints. I am extremely upfront and direct and have no issues communicating. We have a great team currently, and we address any issues as they arise!”
• “This program has been a huge blessing to our family. We appreciate everything done for us.”
• “I am more than happy with the efforts of the care team members. They’re very supportive and attentive.”
• “No (suggestions), I love the team and the care (child) gets.”

The program also received suggestions for improvement in the second cohort survey. Several suggestions included better scheduling of appointments to reduce travel and more frequent reminders of upcoming appointments. Other suggestions included more awareness of available community resources and support groups they can connect with. A few families expressed concern over their Medicaid coverage status.

Year one results also showed improvements in parent/caregiver satisfaction with their child’s healthcare team.

Extent to which the Healthcare Team Encouraged Family to Share in Decision-Making

In addition to measuring family perceptions and satisfaction, the program also looked at healthcare utilization metrics.

The full report on post-program outcomes and perceptions of the cohort two families is available in the supporting documents of this application.

In 2022, the decision was made to finish the cohort two family post surveys, conduct final patient in-person interviews on 12 selected families, then focus primarily on healthcare utilization metrics moving forward. As the program continues to grow and thrive and participation is becoming more fluid based on need, it is less feasible to group patients into cohorts and accurately capture their perceptions as a group. This is a positive change, as the program is growing out of its pilot phase and into a permanent fixture of the Sanford Children’s Hospital. With that, the CYSHCN Program has begun to address the challenge of making the program financially sustainable in the long run. There is high demand for the program, but current funding cannot sustain it in the long run without support from Medicaid. The CYSHCN Director and SDSU evaluation lead met with Medicaid regularly in 2022 to share data from the program and show its potential as a Medicaid Health Home. These conversations are ongoing at this time of writing. 

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

• The SD newborn screening program continued to utilize a contracted 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, the system also can identify missed hearing screens and failed screenings.
• In 2021, the Newborn Screening Program established the South Dakota Newborn Screening Advisory Committee, consisting of pediatric specialists, laboratory personnel, nurses, pediatricians, families, and community members interested in learning more and providing input on the program. The committee was formed to bring professionals and families together and will convene on an annual basis to receive updates from the newborn screening program, provide program input, and discuss additions of new disorders to the South Dakota panel of disorders. SMA and Pompe Disease have been added to the screening panel since the inception of the Newborn Screening Advisory Committee.
• In 2022 and 2023 the NBS program developed new, updated, and improved educational materials as well as HIPPA compliant forms. A physician lab request form will be added in the summer 2023. The program has also been developing a long-term follow up program in conjunction with the CYSHN CMC program at Sanford Children’s Hospital to provide assistance, long term follow up and avoid potential loss to follow up.
• The NBS coordinator has partnered with the midwife community to ensure quality specimens, compliance, and reporting. Educational supplies and materials have been created to the specific populations that they serve. The program has also provided high volume midwives and developed a midwife sharing program with hearing screeners to ensure screening. A newborn hearing screening short follow up program was developed and started in September 2022 in conjunction with the SD EHDI program. Expansion of newborn hearing EHDI follow up is planned for later 2023. Looking at missed or not passed hearing screening in the first 6 months of follow up, the program has successfully improved by 78%.
• During this grant period, the MCH team continued to partner with the IOWA SHL for newborn screening testing and destruction of specimen collection cards. The Newborn Screening Program Coordinator participated in Iowa SHL’s monthly partnership calls among the four state newborn screening programs; Alaska, Iowa, North Dakota, and South Dakota. In addition, the NBS Program Coordinator attended the 2022 APHL Newborn Screening Symposium.