Transition from Pediatric to Adult Health– 2024 Annual Plan Narrative (October 1, 2023– September 30, 2024):

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 strategic and 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 homes for college, work, or other out-of-home living situations. The preparation time required for the transition process is unique to the child and their needs. In many situations, a portion of the planning occurs in the clinic to promote a seamless transition into adult health care. Transition readiness is important for all youth and young adults to receive.

Data from the 2020-2021 National Survey of Children’s Health (NSCH) indicates that 19.4% of children through age 17 has a special health care need in North Dakota. Additionally, 27.7% of adolescents in North Dakota with a special health care need received services necessary to make the transition to adult health care, as compared to 20.5% in the United States (U.S.). North Dakota seems to be moving in the right direction when providing transition-aged adolescents with proper transition services as data from the 2018-2019 NSCH indicated that 26.1% of adolescents in North Dakota with a special health care need received services necessary to make the transition to adult health care. According to National Outcome Measure (NOM) 17.2, the percentage of children with a special health care need (CSHCN) receiving care in a well-functioning system in North Dakota increased from 12.7%, in 2019-2020 to 13.4% in 2020-2021. However, North Dakota continues to trend below the national average of CSHCN that are receiving care in a well-functioning system at 15.4%.

Furthermore, adequate, and continuous insurance appears to play a contributing role whether youth received services necessary related to transitioning appropriately to adult health care. The 2020-2021 NSCH revealed that in North Dakota, of the adolescents with special health care needs, ages 12 through 17, who received necessary services to make transitions to adult health care, 29.8% had adequate and continuous health insurance the last year, whereas 24.7% had inadequate or a gap in insurance coverage the last year. Lastly, an important component of health care that is essential for CSHCN is obtaining a medical home. North Dakota is performing below the national average (42%) of the percent of children with special health care needs, ages 0 through 17, who have a medical home at 37.5%. Therefore, it is essential to promote not only health transition services, but medical home as well.

Because strategies have been categorized by various focus areas (e.g., systems building, families, medical providers, education, etc.), the different Evidence-Based or Informed Strategy Measures (ESMs) have been selected specifically to monitor transition impact within each category. First, the systems-focused ESM will be implemented to evaluate the percentage of transition aged youth receiving transition assessments at contracted multidisciplinary clinics. The goal of this will be to better gauge the level of transition activities occurring with patients and families within the clinic setting. In State Fiscal Year (SFY) 2021, multidisciplinary clinics reported 81.2% of transition-aged attendees received a transition assessment; however, in SFY 2022, multidisciplinary clinics reports 70.1% of transition aged attendees received an assessment. As a result, work efforts will continue to encourage contract grantees to incorporate transition readiness assessments to all transition-aged youth and report what education is being provided within grantees’ reports. Although all youth benefit from transition activities, CSHCN generally require a higher level of preparation for transitioning to adult health care. The multidisciplinary clinics offer services to all individuals at no cost, regardless of residence, insurance coverage, income, and socioeconomic status. Non-English-speaking individuals will continue to be offered interpretive services to assure understanding of the child’s condition and plan of care.

Next, health care professionals/providers play a critical role in initiating the conversation regarding transitioning from pediatric to adult health care. Additional efforts will be implemented and 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 will be incorporated to measure the number of health care providers/professionals who have received transition education and/or training specific to CSHCN. This is expected to have an overall impact on the receipt of care in a well-functioning system. Title V staff plan to collaborate with Got Transition staff to offer a series of webinars on health transition to a targeted audience comprised of health care professionals. Staff plan to partner with the North Dakota Board of Nursing to offer continuing education units.  

It is also realized that youth spend an exponential amount of time at school. Educational professionals, including school nurses, play a key role in better preparing students for addressing health transition-related challenges and help students become better prepared. An ESM will be initiated to measure the number of educational and training opportunities that SHS staff will provide to school nursing staff to expand knowledge and skills around successful student health transitions. While student transition toolkits will be developed utilizing Got Transition resources and disseminated to Special Education Units across the state in year-three, SHS staff have been unable to provide educational opportunities to school staff the last couple of years due to the COVID-19 pandemic. Therefore, work efforts regarding education to school professionals will be a top priority. Educational opportunities for year-four for school personnel will focus on providing education targeted to school nurses on the importance of health care transition for students and strategies on how this work can be incorporated into their current practice. This education will take place on the State School Nurse Quarterly meetings that have already been established and led by the State School Nurse Consultant.

Finally, family engagement and the expansion of family-professional partnerships is imperative in implementing successful health transitions. Information and educational opportunities on transition will be disseminated and/or provided through family support organizations. To measure the impact this has on North Dakota families, an ESM will be implemented indicating the percentage of families that are served by family support contracts who receive education and/or training on health care transition. In Federal Fiscal Year (FFY) 2022, 5,709 families were served by family support contracts and were provided various educational opportunities. Of that number of families, approximately 16% (919) received education and/or training specifically related to adolescent health care transition. This is up from 11% in FFY 2021.

Title V will 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 or further enhance infrastructure and capacity required for successful transitions from pediatric to adult health care for all children, including CSCHN. Contracted clinic requirements will continue to require quality improvement methods regarding transition assessments to be completed. Grantees receiving funding to provide multidisciplinary clinics will continue to be expected to gather information by using the “Transition Readiness Assessment Survey” for youth and parent/caregiver to assure that those attending the clinics are being assessed for transition readiness as they move into adulthood. In addition to the number of transition assessments that are being conducted on adolescents, contract grantees will also be required to report a highlight of the transition-focused education that was provided during the assessment. These clinics will be made available to all families at no out-of-pocket cost. Some clinics could potentially also offer travel reimbursement for families traveling long distances to receive services. This will help to ensure that barriers are eliminated for disparate populations that may have difficulty accessing care. At the state-coordinated cleft lip and palate clinics, staff will continue to provide written feedback in the child/youth’s medical report to provide guidance to the youth and family in areas of transition that may need to be strengthened over the next year. Appropriate transition information and resources will be made available and provided to transition-aged youth. The compiled recommendations received from the multidisciplinary cleft lip and palate clinic staff will be analyzed and disseminated to the families and providers so that appropriate transition planning can occur. In addition, occasional site visits to contracted clinics will resume, since being deferred due to the COVID-19 pandemic, to assure quality services are being delivered and programmatic contract requirements are being fulfilled.

Family-led support organizations have a successful track record in providing information to families and partners regarding important topics such as health transition. SHS has a strong partnership with several family-led organizations that provide leadership, support, and advocacy for families. Four prominent organizations include Family Voices of North Dakota, Pathfinder Services of North Dakota, Federation of Families, and Designer Genes. Other organizations in the state also actively provide support to target populations such as families in the early intervention system and individuals with down syndrome, autism, or hearing loss. SHS will continue to provide funding to family support organizations that will train or assist families in expanding knowledge and leadership capacity around health transition.

Partnerships and collaboration are a huge part of the SHS mission. Staff members will continue to work with other state agencies, committees, stakeholders, and workgroups advocating for successful pediatric to adult health transitions. A transition workgroup was developed by SHS staff which will continue be to be utilized to gather valuable feedback and input regarding future health transition strategies and work efforts. A staff member from SHS will volunteer to participate on the planning committee for the annual Power-Up for Health conference, which is geared toward individuals with disabilities. In addition, SHS staff will participate on the planning committee for the Secondary Transition Interagency Conference. Lastly, SHS staff will offer support and aid in supporting the newly developed Transition Curriculum Trainings hosted by Family Voices of North Dakota staff. New partnerships and collaboration will continue to be explored and established through participation on various interdisciplinary and stakeholder groups.

The core goals of health care transition are to improve the ability of youth and young adults to manage their own health care and effectively use health services, and to ensure an organized clinical process in pediatric and adult practices to facilitate transition preparation, transfer of care, and integration into adult-centered care. SHS recognizes the importance of health care transition and strives to expand the knowledge and resources offered in North Dakota to improve upon the transition process.

Partnerships and collaboration are expected to continue, and new key partners will be fostered. Current critical partnerships/initiatives include:

• North Dakota Transition Community of Practice – This committee will provide 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 Interagency Task Force on Transition was developed to work on specific Region 7 (Bismarck and surrounding areas) projects and deliverables resulting from the North Dakota Transition Community of Practice committee.
• North Dakota School Nurse Organization – School nurses across the state provide valuable insight and feedback on health care transition work efforts.
• Family Organizations – Family engagement and partnerships are a priority in implementing successful health transitions. Information and educational opportunities on transition will be disseminated and/or provided through family support organizations.
• Health Care Providers – Several health care providers actively participate in the transition workgroup to provide valuable insight and feedback on transition-related activities.
• Got Transition staff – SHS staff will collaborate with Got Transition staff to provide education on health transition to health care providers across the state.
• North Dakota Chapter of the American Academy of Pediatrics (AAP) – SHS staff will collaborate with the AAP to aid in improving health care transition in North Dakota.