National Performance Priority Area: Transition from Pediatric to Adult Health Care (October 1, 2021 – September 30, 2022):

The transition to adulthood is a critical developmental period for all youth but is especially important for children with special health care needs (CSHCN). According to the 2020-2021 National Survey of Children’s Health (NSCH), 19.4% of children in North Dakota are children with a special health care need; this percentage rose slightly from 2019-2020 at 17.3%. Fortunately, the number of CSHCNs that received services necessary for transition to adult health care in North Dakota slightly increased from 27.5% in 2019-2020 to 27.7% in 2020-2021; this is trending above the 2020-2021 national average of 20.5%. Unfortunately, the 2020-2021 NSCH indicated that 26.3% North Dakota children without special health care needs received services necessary for transition to adult health care, which declined slightly from the 2019-2020 NSCH which reported 28.4% received transitions services. However, when compared to the national average of 16.0%, North Dakota is still performing well in this area. While transition services that aid in the transition from pediatric to adult health care are essential for all children, CSHCN undergo extra stress and are particularly vulnerable, especially during this transition period. It is imperative that these families receive the extra support needed. North Dakota is performing well above the national average when it comes to the percent of adolescents with special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care. According to the 2020-2021 NSCH, 27.7% of CSHCNs received services necessary for transition to adult health care versus the national average of 20.5%. Lastly, medical homes have been shown to be effective in ensuring children are receiving all necessary services. According to the 2020-2021 NSCH, 35.1% of children, ages 12 through 17, in North Dakota received services necessary for transition in a facility that met medical home criteria. This is higher than the national average of 18.6%.

Transition is defined as the movement, passage, or change from one position or state to another. This occurs for all children but may be more difficult for children and youth that have special health care needs. This is of importance as youth and young adults begin to transition from a pediatric health system to an adult health care provider. Often this requires leaving a pediatric provider that has cared for the child and family with a very hands-on approach for managing their medical needs and a substantial amount of care coordination. As the child ages, it becomes very important for the family and child to start planning for this change early so that their needs can be met prior to the youth turning 18 years of age, when many leave home for college, work, or other out-of-home living situations. The preparation time required is different for all children. In many situations, a portion of the planning can occur in the clinic to promote a seamless transition into adult health care. Transition readiness is important for all youth and young adults.

The transition-driven strategies have been categorized by various focus areas (e.g., systems building, families, medical providers, education, etc.); therefore, several Evidence-Based or Informed Strategy Measures (ESMs) were selected specifically to examine the transition impact within each category. The systems-focused ESM was implemented to evaluate the percentage of transition aged youth receiving transition assessments at contracted multidisciplinary clinics. These transition assessment requirements were expanded to include quality improvement methods regarding transition assessments completed. The goal of this was to better gauge the level of transition activities occurring amongst patients and families. Following year-two data collection for State Fiscal Year 2021, multidisciplinary clinics reported 70.1% of transition-aged attendees received a transition assessment in addition to transition-focused education. The multidisciplinary clinics offered services to all individuals at no cost, regardless of residence, insurance coverage, income, and socioeconomic status. Several clinics also offered travel reimbursement for families traveling long distances to attend clinic. This was to help ensure that barriers are eliminated for disparate populations that may have difficulty accessing care. Non-English-speaking individuals will continue to be offered interpretive services to assure understanding of the child’s condition and plan of care.

Health care professionals/providers play a critical role in initiating the conversation regarding transitioning from pediatric to adult health care. Additional efforts have been geared towards improving the level of education and training to health care providers/professionals on strategies to better facilitate these discussions with youth and their families. An ESM was incorporated to measure the number of health care providers/professionals who have received transition education and/or training specific to CYSHCN. Following year-two of data collection, six educational opportunities were provided to health care professionals/providers from Title V regarding health care transition. SHS staff directly lead five of these educational opportunities which educated 193 professionals. While transition toolkits were previously mailed out to all pediatricians across the state, more toolkits were provided to providers that requested them including multidisciplinary clinic coordinators. In addition, partnerships with other Title V groups were established to ensure transition curriculum was incorporated into their work efforts, such as adolescent well-visit education. Lastly, while conversations were had on how transition-related fields could be integrated into the Care Coordination module within the North Dakota Health Information Network (NDHIN), additions to the module were not made. Work efforts and collaboration within the NDHIN will continue.

It is also realized that youth spend an exponential amount of time at school. Educational professionals and school nurses play a role in better preparing students for addressing health transition-related challenges and help students be better prepared. An ESM was implemented to measure the education and training efforts that SHS would provide to school staff and partners to expand knowledge and skills around successful health transitions. Work efforts regarding this ESM were impacted by the COVID-19 pandemic due to restrictions that were put in place within the school systems along with other competing priorities. Due to these barriers that were faced, Title V staff were unable to provide education and/or trainings to school staff. However, Title V staff were still able to collaborate and build professional partnerships with stakeholders within the school system, including special education teachers and staff from the Department of Public Instruction and Vocational Rehabilitation. Year-three activities include the development and dissemination of transition toolkits for adolescent-aged students.

Family engagement is a key priority when implementing successful health transitions. Information and educational opportunities on transition were disseminated and/or provided through family support organizations. To measure the impact this had on North Dakota families, an ESM was developed to indicate the level of education and training provided regarding health care transition. Satisfaction with education and training received was evaluated internally by SHS through contract management with family support organizations. Following year-two of work efforts, 5,709 families were served by family support contracts and were provided educational opportunities. Of those families, approximately 16.1% (919) received education and/or training related to health care transition. This is a duplicated count as it is not unusual for families to receive education more than once.

Title V will continue to provide resources and technical assistance necessary to implement evidence-based or evidence-informed and/or promising practices to advance health care transition in North Dakota through September 30, 2025. SHS will collaborate with partners to develop and further enhance infrastructure and capacity required for successful transitions from pediatric to adult health care for all children, including CYSHCN.

Staff from SHS has remained actively engaged in the North Dakota Department of Public Instruction (NDDPI)’s Transition Community of Practice, which includes a diverse group of stakeholders (e.g., representatives from special education, independent living centers, vocational rehabilitation, family organizations). This committee has provided opportunities for collaboration with school personnel, vocational rehabilitation, developmental disabilities program managers, State Council on Developmental Disabilities, and many others who are working with transition-aged youth. The Transition Community of Practice hosts a transition-focused two-day conference biannually which SHS staff will join the planning committee and plan to present on transition from pediatric to adult health care. In addition, partnerships with special education professionals have continued to explore additional opportunities to collaborate on regarding the development of educational toolkits and outreach strategies.

SHS has a contract with and has partnered with Family Voices of North Dakota to develop a transition-related curriculum and training for both the adolescent and the parent or caregiver. The curriculum was developed, and a two-day training on the content was piloted in two locations, including a local school, for both the youth and the caregiver. This training was provided by Family Voices staff to any individuals interested in attending and they received great feedback from attendees. SHS staff had the opportunity to observe a training and aid in promoting the curriculum. The interest in the training is increasing among professionals across the state.

To expand partnerships even further, an SHS staff member continued to participate on the North Dakota Interagency Task Force on Transition. Key members of this committee included staff from the North Dakota Federation of Families for Children’s Mental Health, North Dakota Independent Living Centers, the Department of Human Services Division of Developmental Disabilities, Job Service North Dakota, Vocational Rehabilitation, and the NDDoH. Updates are shared from each agency regarding opportunities to collaborate or provide education to stakeholders. Engaging youth with transition-related activities has continued to be challenging. Therefore, SHS has continued partnering with the Health Equity Office in the NDDoH and their Youth Advisory Board (YAB). SHS staff attended and participated in YAB meetings to seek input and feedback as needed to drive adolescent partnerships across North Dakota. Furthermore, SHS staff participated in the Power-Up for Health Conference planning committee to help incorporate transition-related speakers and education into the conference, which is geared towards empowering youth and young adults with a special health care need. SHS staff had the opportunity to present at the conference on transition from pediatric to adult health care in addition to having a booth at the conference to provide additional transition-related materials and resources to attendees.

Cross-cutting implementation strategies remained at the heart of all SHS activities and led to continuous quality improvement within programs. These strategies included care coordination, collaboration, information/education, and data-informed decisions. SHS shared transition data with partners at the annual SHS Medical Advisory meeting to improve data-driven decisions around existing priority efforts. A transition workgroup with interdisciplinary key partners and stakeholders that was previous formed to assist with transition-related strategic planning and work activities continued to be utilized. Additional data that illustrated the importance of SHS programmatic efforts to improve transition services were also shared in several presentations provided by SHS staff throughout this reporting period. Data around various topic areas, including individuals with special needs, were discussed with the YAB, Human Service Zone staff, and individuals attending the Fetal Alcohol Spectrum Disorder Conference and the Power Up for Health Conference.

Technical assistance was provided to existing grantees of SHS multidisciplinary clinic contracts regarding the transition-focused client data fields that are to be completed for all transition-aged clients. A review of transition-related resources was reviewed to ensure grantees were aware of the available resources that could assist with education and assessment. These tools furnished providers with information needed to facilitate further discussion regarding the aspects that were most needed for each patient to successfully transition to adult health care. Strategies were implemented to ensure that these work efforts were standardized and consistent amongst the various professionals. Clinic coordinators have previously indicated that these changes were beneficial to their clinics and contributed to more positive patient outcomes for transition. To ensure quality care was delivered and transition needs were addressed, SHS staff conducted a site visit to a funded multidisciplinary clinic and provided recommendations for quality improvement. More site visits will be completed moving forward to ensure transition-focused work efforts are incorporated into the visit.

Various methods for dissemination of information pertaining to transition were implemented. Resource materials pertaining to transition have a dedicated location on the SHS website for all families and providers to easily access. These materials include resources from GotTransition for both parents and youth, local resources including Launch my Life North Dakota, and educational resources regarding medical home. Along with these materials, SHS has linked the national centers of excellence to the website so that partners utilize evidence-based materials and strategies in their transition projects or contract workplans. Transition materials were also disseminated at various conferences and stakeholder meetings to ensure partners had current resources.

While barriers as a result of COVID-19 were challenging and impacted transition activities, transition efforts will continue to resume and accelerate as SHS recognizes the importance of enhancing and expanding transition services and education to children and young adults across the state. Moreover, SHS will continue their work efforts to provide transition-related education to providers and professionals to meet the needs of transition-aged children and continue to form and strengthen partnerships.