Section III.E.2.c State Action Plan Narrative by Domain

MCH Population Domain: Children with Special Health Care Needs

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

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 occurs in the clinic to promote a seamless transition into adult health care. Transition readiness is important for all youth and young adults.

Data from the 2018-2019 National Survey of Children’s Health (NSCH) indicates 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, as compared to 22.9% 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 2017-2018 NSCH indicated that 16.1% 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, while receiving care in a well-functioning system in North Dakota, only 10.9% of CSHCN are receiving proper care, and 89.1% of CSHCN do not receive care in a well-functioning system. This is compared to the U.S. average of 14.1% of CSHCN that are receiving proper care.

Household income appears to play a contributing role whether CSHCN received services necessary related to transitioning. In North Dakota, only 7.7% of CSHCN at a Federal Poverty Level (FPL) between 200%-399% received services necessary for transition as compared to 27.7% of CSHCN at the FPL over 400%.

In alignment with national trends, North Dakota appears to be on track with actively working with the child at 74.1% compared to the U.S. at 77.1%. However, work needs to be done at a state and national level with anticipatory guidance if needed as the 2018-2019 NSCH data shows North Dakota at 27.7% versus the U.S. at 24.8%. It was also found that racial disparities amongst adolescents receiving special education were not significant. According to the North Dakota Department of Public Instruction (NDDPI), of transition-aged students receiving special education in 2019, 70.69% were white while 10.6% were American Indian.

Because strategies have been categorized by various focus areas (e.g., systems, 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. 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. Following year-one of a new cycle of data collection, multidisciplinary clinics reported 74% of transition-aged attendees received a transition assessment. Although all youth benefit from transition activities, CYSHCN 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.

Health care professionals/providers play a critical role in initiating the conversation regarding transitioning from pediatric to adult health care. Additional efforts will be 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 CYSHCN. This is expected to have an overall impact on the receipt of care in a well-functioning system. Following year-one of a new cycle 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 could potentially play a role in better preparing students for addressing health transition-related challenges and help students be better prepared. An ESM will be utilized to measure the education and training efforts that SHS will be providing to school staff and partners to expand knowledge and skills around successful health transitions. Following year-one of a new cycle of data collection, one educational opportunity was provided to school personnel from Title V regarding health care transition. This ESM was greatly impacted by the COVID-19 pandemic and is anticipated to increase going forward.

Family engagement is a priority 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 level of education and training provided regarding health care transition. Satisfaction with education and training received will also be evaluated internally by SHS through contract management with family support organizations. Following year-one of the new cycle of data collection, 7,902 families were served by family support contracts and were provided educational opportunities. Of that number of families, approximately 4% (286) received education and/or training related to healthcare transition.

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 CYSCHN. In the new Request for Proposals (RFPs) from SHS, contracted clinic requirements will be expanded to include quality improvement methods regarding transition assessments completed. Grantees receiving funding to provide multidisciplinary clinics will 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. These clinics will continue to 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. 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 that is targeted to specific age groups (e.g., 14-15, 16-17, and 18-21 years of age). 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. 

State-level staff will provide technical assistance and recommendations to multidisciplinary clinic teams regarding transition guidelines and activities being implemented. Occasional site visits to contracted clinics will occur to assure quality services are being delivered and programmatic contract requirements are being fulfilled. Special attention will be given to the financial component of the clinics through the completion of a financial risk assessment by grantees. This will indicate whether funds are being spent appropriately for the CYSHCN population.

Because CSHCN are often involved with special education and/or health accommodations in the school setting proper education needs to be provided to school nurses and other educational staff members. This will assist them in formulating Individualized Health Plans (IHP’s), Individualized Education Programs (IEP’s) and 504 plans to provide special considerations for children with health conditions. SHS will offer technical assistance and trainings to these professionals so that needs can be met and important topics like transition to adult health can be addressed within the educational environment.

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. During the next biennium SHS will 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, and workgroups advocating for successful pediatric to adult health transitions. 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. New partnerships and collaboration will continue to be established going forward through newly developed grant contracts for the next biennium that are geared towards enhancing systems development and transition services.

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.

Work and collaboration are expected to continue, and new key partners will be added. 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.
• NDDPI – SHS staff will engage NDDPI regarding ongoing education on transition for students in North Dakota. This will include working with educational professionals and school nurses to assist in preparing students regarding transition-related challenges in the school.
• Family Organizations – Family engagement is 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. Educational materials and opportunities to expand transition-related capacity for health care providers/professionals will be disseminated.
• Vocational Rehabilitation – This organization through the Department of Human Services, assists North Dakotans with disabilities to improve their employment opportunities and to assist North Dakota businesses in finding solutions to their disability-related issues.
• Special Olympics of North Dakota - Special Olympics is an international organization dedicated to empowering individuals with intellectual disabilities to become physically fit, productive, and respected members of society through sports training and competition.