III.E.2.c. State Action Plan - CSHCN - Application Year - North Dakota - 2023
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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– 2023 Annual Plan Narrative (October 1, 2022– September 30, 2023):
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 2019-2020 National Survey of Children’s Health (NSCH) indicates that 17.3% of children through age 17 has a special health care need in North Dakota. Additionally, 27.5% 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 22.5% 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 10.9% in 2018-2019 to 12.7%, in 2019-2020. However, North Dakota continues to trend below the U.S. average of CSHCN that are receiving care in a well-functioning system at 14.4%.
Furthermore, household income appears to play a contributing role whether youth received services necessary related to transitioning appropriately to adult health care. The 2019-2020 NSCH revealed that in North Dakota, only 14.3% of youth at a Federal Poverty Level (FPL) between 100%-199% received services necessary for transition as compared to 29.6% of youth at the FPL between 200%-399%.
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. Following year-two of a five-year action plan, multidisciplinary clinics reported 81.2% of transition-aged attendees received a transition assessment, up from year-one at 74%. While North Dakota seems to be trending in the right direction on the percentage of youth receiving a transition assessment during a multidisciplinary clinic, work efforts will continue to encourage contract grantees to incorporate transition readiness assessments to all transition-aged youth. 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. Following year-two of data collection, every pediatric provider in the state received a transition toolkit for providers from Got Transition. Sustained work efforts to continue dissemination of transition toolkits will remain an action item for SHS staff.
It is also realized that youth spend an exponential amount of time at school. Educational professionals 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 education and training efforts that SHS will provide to school staff and partners to expand knowledge and skills around successful student health transitions. Unfortunately, following year-two of planned work activities, SHS was unable to provide educational opportunities to school staff due to the COVID-19 pandemic. Therefore, work efforts regarding education to school professionals will be a top priority this next year. Educational opportunities for year-three for school personnel include the development and dissemination of a student transition toolkit for schools which will be comprised of resources for school staff and for students regarding health transition.
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. Satisfaction with education and training received will also be evaluated internally by SHS through contract management with family support organizations. Following year-two of the five-year action plan, 7,170 families were served by family support contracts and were provided educational opportunities. Of that number of families, approximately 11% (763) received education and/or training related to health care 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 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. 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.
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 resume, since being deferred due to the COVID-19 pandemic, to assure quality services are being delivered and programmatic contract requirements are being fulfilled.
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 education 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. As mentioned above, SHS will develop and disseminate Transition Toolkits for education staff and students regarding health care transition. In addition, a health transition educational PowerPoint will be created and distributed to school personnel with education on transition and transition-related goals that can be incorporated into specialized school plans. SHS staff will collaborate with school staff 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. 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, 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 health transition strategies. 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 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.
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.
- 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.
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– 2023 Annual Plan Narrative (October 1, 2022– September 30, 2023):
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 2019-2020 National Survey of Children’s Health (NSCH) indicates that 17.3% of children through age 17 has a special health care need in North Dakota. Additionally, 27.5% 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 22.5% 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 10.9% in 2018-2019 to 12.7%, in 2019-2020. However, North Dakota continues to trend below the U.S. average of CSHCN that are receiving care in a well-functioning system at 14.4%.
Furthermore, household income appears to play a contributing role whether youth received services necessary related to transitioning appropriately to adult health care. The 2019-2020 NSCH revealed that in North Dakota, only 14.3% of youth at a Federal Poverty Level (FPL) between 100%-199% received services necessary for transition as compared to 29.6% of youth at the FPL between 200%-399%.
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. Following year-two of a five-year action plan, multidisciplinary clinics reported 81.2% of transition-aged attendees received a transition assessment, up from year-one at 74%. While North Dakota seems to be trending in the right direction on the percentage of youth receiving a transition assessment during a multidisciplinary clinic, work efforts will continue to encourage contract grantees to incorporate transition readiness assessments to all transition-aged youth. 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. Following year-two of data collection, every pediatric provider in the state received a transition toolkit for providers from Got Transition. Sustained work efforts to continue dissemination of transition toolkits will remain an action item for SHS staff.
It is also realized that youth spend an exponential amount of time at school. Educational professionals 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 education and training efforts that SHS will provide to school staff and partners to expand knowledge and skills around successful student health transitions. Unfortunately, following year-two of planned work activities, SHS was unable to provide educational opportunities to school staff due to the COVID-19 pandemic. Therefore, work efforts regarding education to school professionals will be a top priority this next year. Educational opportunities for year-three for school personnel include the development and dissemination of a student transition toolkit for schools which will be comprised of resources for school staff and for students regarding health transition.
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. Satisfaction with education and training received will also be evaluated internally by SHS through contract management with family support organizations. Following year-two of the five-year action plan, 7,170 families were served by family support contracts and were provided educational opportunities. Of that number of families, approximately 11% (763) received education and/or training related to health care 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 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. 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.
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 resume, since being deferred due to the COVID-19 pandemic, to assure quality services are being delivered and programmatic contract requirements are being fulfilled.
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 education 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. As mentioned above, SHS will develop and disseminate Transition Toolkits for education staff and students regarding health care transition. In addition, a health transition educational PowerPoint will be created and distributed to school personnel with education on transition and transition-related goals that can be incorporated into specialized school plans. SHS staff will collaborate with school staff 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. 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, 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 health transition strategies. 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 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.
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.
- 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.
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