National Performance Priority Area: Transition from Pediatric to Adult Health Care (October 1, 2020 – September 30, 2021):

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 2019-2020 National Survey of Children’s Health (NSCH), 17.3% of children in North Dakota are children with a special health care need. Fortunately, the number of CSCHNs that received services necessary for transition to adult health care in North Dakota slightly increased from 26.1% in 2018-2019 to 27.5% in 2019-2020; this is trending above the 2019-2020 national average of 22.5%. Surprisingly, the 2019-2020 NSCH indicated that 28.4% North Dakota children without special health care needs received services necessary for transition to adult health care compared to the national average of 17.6%. 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. Medical homes have been shown to be effective in ensuring children are receiving all necessary services. According to the 2019-2020 NSCH, 27.4% 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 20.3%.

Additional explanation regarding trends in North Dakota data may be found in Section V. Supporting Documents, Supporting Document 2 - FFY 2021 Midterm Report Card.

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.

Because strategies have been categorized by various focus areas (e.g., systems, families, medical providers, education, etc.), different Evidence-Based or Informed Strategy Measures (ESMs) were selected specifically to monitor 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-one of a new cycle of data collection, multidisciplinary clinics reported 81% of transition-aged attendees received a transition assessment. The multidisciplinary clinics offered services to all individuals at no cost, regardless of residence, insurance coverage, income, and socioeconomic status. Some clinics also offered travel reimbursement for families traveling long distances. 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-one of data collection, eight educational opportunities were provided to health care professionals/providers from Title V regarding health care transition.

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 greatly impacted by the COVID-19 pandemic due to restrictions that were put in place within the school systems. Because of these barriers that resulted from the pandemic, Title V staff were unable to provide education and/or trainings to school staff. However, moving forward Title V staff are optimistic that work efforts and collaboration within the schools will continue and educational opportunities will be offered.

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-one of work efforts, 7,170 families were served by family support contracts and were provided educational opportunities. Of those families, approximately 11% (763) received education and/or training related to healthcare transition.

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 CYSCHN.

Staff from the Division of 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. In addition, collaboration with Special Olympics of North Dakota and International has continued to explore additional opportunities for collaborative educational modules and outreach strategies.

A newly formed partnership has formed between SHS staff and Newborn Screening staff as they work to collaborate on transition-related work efforts for CSHCN. A core goal between these programs is to aid in a smooth transition process from birth to age 21. To expand partnerships even further, an SHS staff member has participated on the North Dakota Interagency Task Force on Transition. Key members of this committee include 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 have been 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, who has been forming a new Youth Advisory Board (YAB). SHS staff have attended and participated in YAB meetings to provide input and feedback as needed to drive adolescent partnerships across North Dakota. Furthermore, SHS staff have joined 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.

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 has shared transition data with partners annually at the SHS Medical Advisory and Family Advisory meeting to improve data-driven decisions around existing priority efforts. A transition workgroup with interdisciplinary key partners and stakeholders was formed to assist with transition-related strategic planning and work activities. 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, MCH Tribal Symposium attendees, Human Service Zone staff, and families attending the Family Voices Extended Learning Call presented by SHS staff.

Technical assistance was provided to new and existing grantees of SHS multidisciplinary clinic contracts regarding new transition-focused client data fields that will need to be completed. A review of transition tools was reviewed to ensure grantees were aware of the available resources. 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. Policies 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. While only one site visit was able to be completed due to COVID-19, more site visits will be completed moving forward as facilities allow.  

Patient-centered transition tool kits were previously developed and distributed to SHS contract grantees to provide feedback on appropriateness of resources. These toolkits were updated and revised based upon feedback and suggestions received from grantees. The newly-revised toolkits will be disseminated to all pediatric specialists across North Dakota to assist with and help guide transition-focused assessments and efforts. Moreover, an educational transition-focused PowerPoint was developed by SHS staff for school professionals to utilize in their classrooms. The PowerPoint provided an overview of health care transition and was sent to several school nurses for feedback. The PowerPoint is currently being revised to reflect the suggested comments and will be disseminated to school personnel to utilize once revisions are complete. SHS staff also plan to utilize this PowerPoint to provide education to targeted audiences moving forward.

New methods for dissemination of information pertaining to transition were implemented. Resource materials pertaining to transition now have a dedicated location on the NDDoH website for all families and providers to easily access. These materials include resources from Got Transition 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 NDDoH website so that partners utilize evidence-based materials and strategies in their transition projects or contract workplans.

While the Biannual Transition Conference through the NDDPI was to take place in 2021, due to COVID-19, that event was cancelled. The next conference is currently being planned tentatively for 2022 and committee members are hopeful this will occur. SHS staff are active participants on the planning committee for this conference and work to incorporate health care transition into the conference.

The Requests for Proposals for the new biennium of contracts that began 7/1/2021 were broken down into three different categories, one focusing on CSHCN System Development and Transition. There were two organizations that received funding for their project proposal in this area. Family Voices of North Dakota was awarded funding and will be working to develop transition-related materials unique to North Dakota and implement workshops for families to better understand community resources and develop health care transition plans and provide youth and families education on how to navigate adult health systems. Furthermore, Northwood Deaconess Health Center also received funding and will be working to expand their pediatric coordination of care for children with special health care needs referred for physical, occupational, and/or speech therapy services within their facility.

In addition to technical assistance provided by SHS staff to new and existing grantees of SHS multidisciplinary clinic contracts regarding transition assessments, staff have continued quality assurance activities to assure contract transition-focused activities and requirements are being met. An annual call has been conducted with the large group of clinic coordinators, and SHS staff are always available via phone or email to answer questions as they arise on a case-by-case basis.

While restrictions due to COVID-19 were challenging and significantly 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.