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– 2021 Annual Plan Narrative (October 1, 2020– September 30, 2021):

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 2017-2018 National Survey of Children’s Health indicates 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, as compared to 18.9% in the United States (U.S.). According to National Outcome Measure (NOM) 17.2, while receiving care in a well-functioning system in North Dakota, there is only 10.6% of CSHCN are receiving proper care, and 89.4% of CSHCN do not receive care in a well-functioning system. In comparison to U.S., which is 13.9%, there is a slight decrease in the difference. The trend from 2016-2018 shows that the care decreased from 13.0% to 10.6%. Much of the data that pertains to North Dakota has too low of numbers to accurately report.

North Dakota was doing relatively well at providing CSHCN with transition services in 2016 at 31.9%; however, a significant decrease was noted in transition services amongst CSHCN at only 16.1% in 2018. Medicaid recipients with special health care needs, ages 12 through 17, were 34.6% more likely than those with private insurance to receive services necessary to transition to adult health care in North Dakota. Receiving transition services does not seem to be associated with insurance type. 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.

North Dakota appears to be moving in the wrong direction when providing transition-aged adolescents with proper transition services when compared to the nation. There was an increase on the national level of adolescents who received care from 16.7% to 18.9% in the U.S.

Subjective data collected during the 2020 Work-as-One Needs Assessment found that when providers were asked if they understood the six core elements of transition, 80% (12/15) providers responded they did not. When asked if they would like further education on the six core elements of transition, 46.67% responded yes.

When the parents were asked whether their child makes their own doctor appointments, 73.24% (52/71) stated their child does not while 18.31% (13/71) stated they need assistance in this area. When asked whether their child knows how to fill out medical forms, 66.20% (47/71) stated their child did not know how to fill out medical forms while 22.54% (16/71) stated they need assistance in this area.

Special Health Services (SHS) will be working closely with providers and families to offer necessary education and training on the importance of discussing transition with youth and their families. Within the transition services provided to CSHCN, more time should be spent on anticipatory guidance, as only 24.6% of CSHCN reported support in this area.

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.  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.

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. Although all youth benefit from transition activities, CYSHCN generally require a higher level of preparation for transitioning to adult health care, so all partners play an important role.

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.

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.

School professionals often have extremely busy schedules during the school days. To accommodate their schedule, SHS will offer educational opportunities during evenings, weekends, summers, professional development days utilizing virtual platforms to assure availability options.

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.

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:

• ND 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.
• North Dakota Department of Public Instruction (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.