NPM 12 – Percent of adolescents, with and without special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care

 

Introduction: Transition Planning

For the Children with Special Health Care Needs (CSHCN) population domain, Hawaii selected NPM 12, Transition to Adult Health Care, based on the five-year DOH needs assessment results. By July 2025, the State seeks to increase the percentage of youth, with and without special health care needs, who received transition services to 27%.

 

Data: Although the NPM 12 measure for this indicator reports on transition services received by youth with and without special needs, the federally-available data is reported separately for each sub-group of adolescents. The data for special needs youth was used for this measure since it falls in the CSHCN population domain.

 

The aggregated 2020-2021 data indicates that the estimate for Hawaii (21.9%) did not meet the 2022 state objective (26.0%) but was not significantly different from the national estimate of 20.5% for youth with special health care needs. The increase from 2019-2020 (15.9%) was not significant. The related HP 2030 objective for this measure is under development. The sample size was unfortunately too small for subgroup analysis.

 

For adolescents with no special health care needs, aggregated 2019-2020 data indicates that the estimate for Hawaii (18.8%) was not statistically different from the nation (17.6%); however, the increase from 2017 (10.4%) was statistically significant. There were no significant differences in reported subgroups by household income poverty level, nativity, sex, and household structure, based on the 2019-2020 data provided.

 

Objectives: The State objectives through 2025 were updated to reflect a 10% improvement over five years (2% per year). The related HP 2030 objective for this measure is currently under development.

 

Title V lead/funding: The Children and Youth with Special Health Needs Section (CYSHNS) in the Children with Special Health Needs Branch (CSHNB) is the lead program for this priority measure. The CYSHNS Section Supervisor provides the leadership for NPM 12 activities. To ensure that transition planning benefits all youth, CYSHNS partners with the Maternal and Child Health Branch (MCHB) Adolescent Health Program to integrate transition planning into their Title V activities promoting adolescent wellness visits. The statewide Transition team meets monthly via Zoom.

 

Title V does not directly fund transition activities but funds key CYSHNS staff positions, including the CYSHNS Section Supervisor and Nutritionist. Title V also funds the CSHNB Chief, Research Statistician, and administrative staff, who provide support to the Transition team.

 

Key Partners: Professional, state, and community partners in Hawaii who actively support and promote youth transition to adult life include:

• Title V Adolescent Health Program
• American Academy of Pediatrics-Hawaii Chapter
• Hilopaʻa Family to Family Health Information Center (Hilopaʻa F2FHIC)
• Hawaii State Council on Developmental Disabilities (HSCDD)
• Hawaii State Special Parent Information Network (SPIN)
• Hawaii State Disability and Communication Access Board (DCAB)
• Hawaii State Department of Education (DOE)
• TeenLink Hawaii
• University of Hawaii at Manoa Center on Disability Studies (CDS)
• Kaiser Permanente Hawaii
• Special Olympics Hawaii
• MedQUEST, Department of Human Services (DHS)
• EPSDT Coordinators (DHS)
• Child Welfare Program for foster children (DHS)
• Maternal and Child Health Leadership Education in Neurodevelopmental and Related Disabilities Program (MCH-LEND)
• Community Children’s Councils, Department of Education (DOE)
• Leadership in Disabilities and Achievement of Hawaii (LDAH)
• No Wrong Door, Hawaii Executive Office on Aging

 

Strategies: Hawaii has three strategies for transition:

• Incorporate transition planning in service coordination activities for youth enrolled in CYSHNS and their families.
• Provide education and public awareness on transition to adult health care and promote the incorporation of transition services into organizational practices in collaboration with state and community partners.
• Develop and expand efforts to address health disparities in transition services for youth.

 

The first strategy is assessed by a scale that monitors progress on integrating transition planning into the CYSHNS practices/protocol, based on Got Transition’s Six Core Elements of Health Care TransitionTM 3.0, which currently serves as the NPM 12 strategy measure (ESM 12.1).

 

Evidence: The first two transition strategies for Hawaii are based on input collected from the 2020 Title V needs assessment; Association of Maternal and Child Health Programs (AMCHP) NPM 12 Toolkit; the MCH Evidence Center; MCH Workforce Development Center technical assistance; Got Transition website; and the 2020 Federal Youth Transition Plan and national best practice recommendations from Centers for Medicare and Medicaid Services (CMS) 2014 report titled, Paving the Road to Good Health. A third strategy focusing on health equity was added in 2021. Progress on the strategies is described below. The MCH Evidence Center identifies this ESM as an ‘innovative tool’ to track transition activities and “is a strong measure of an evidence-based strategy.”

 

COVID Impacts: After the dramatic shutdown of in-person services in 2020-21, CYSHNS services began returning to pre-COVID levels in 2022 as restrictions were lifted and vaccinations became readily accessible for all ages. Post-COVID changes remain, including continued use of telehealth visits for families with accessibility issues and families facing economic hardships with the rising cost of living. Medical visits for children continue to lag for some, but most have resumed regular care.

 

New partnerships established during COVID with state agencies, healthcare providers, and community organizations continue to advance transition planning for youth.

 

Strategy 1: Incorporate transition planning in service coordination activities for youth enrolled in CYSHNS and their families

Core Elements: CYSHNS transition to adult health care efforts are guided by Got Transition’s Six Core Elements of Health Care TransitionTM 3.0. The Core Elements are integrated into CYSHNS policies and procedures for all youth and their parents/caregivers receiving CYSHN services.

 

Core Element 1: Transition and Care Policy/Guide

This element focused on developing a CYSHNS transition policy that was completed in 2019. All CYSHNS staff are educated on transition approach, policy, the Six Core Elements, Title V, and the roles of CYSHNS, youth/family, and pediatric/adult health care teams in the transition process.

 

Core Element 2: Tracking and Monitoring

This element established a process to track progress in the client database of transition activities for youth enrolled in CYSHNS. Update of the database was completed in 2019. As a result of the update, transition progress and completion can now be tracked through the database.

 

Core Element 3: Transition Readiness

This core element ensured that CYSHNS staff meet with youth and parents/caregivers at least annually to assess transition readiness and the youth’s ability to manage their health care, starting at age 12-16. This activity was completed in 2022.

 

CYSHNS staff continued to utilize and update transition tools to guide youth and parents/caregivers through the transition process with practitioner, youth, and family input. CYSHNS assisted youth in downloading Got Transition’s Medical ID phone application onto their mobile phones to store important health-related information that is easily accessible for the user.

 

Core Element 4: Transition Planning

This core element ensures transition planning is conducted effectively by reviewing and updating individualized transition goals annually with youth/families. This activity was completed in 2022. CYSHNS staff are currently working on developing outreach information on legal changes in decision-making, privacy, and consent issues.

 

Core Elements 5 and 6: Transition Transfer of Care and Transition Completion

The above activities are intended to culminate in youth and their parents/caregivers successfully transitioning to adult health care providers. Staff provided guidance, resources, and training to help youth apply for health insurance coverage as an adult, select adult health care providers, and learn to manage their adult health care. This activity was completed in 2022.

 

CYSHNS staff assisted with referrals to adult service agencies through the state’s No Wrong Door program, an integrated person-centered system that supports individuals of all ages, disabilities, and payers. The No Wrong Door referral system provides a universal intake point to assist with better access to care.

 

ESM 12.1 Degree to which the Title V Children and Youth with Special Health Needs Section promotes and/or facilitates transition to adult health care for Youth with Special Health Care Needs (YSHCN), related to Got Transition’s Six Core Elements of Health Care TransitionTM 3.0.

	2016	2017	2018	2019	2020	2021	2022	2023	2024	2025
Annual Objective		10	17	21	25	27	29	30	33
Annual Indicator	12	13	18	22	24.5	26	31

 

Strategy Measure Progress: ESM 12.1 measures the progress of CYSHNS work under Strategy 1. The rating scale has 11 strategies adapted from Got Transition’s Six Core Elements of Health Care TransitionTM 3.0. CYSHNS staff scores each item from 0-3 for a maximum total score of 33. For FFY 2021, the ESM 12.1 score was 26 (78.8% completion), meeting the annual target (24).

 

Data Collection Form – FFY 2019 ESM 12.1: Degree to which the Title V Children and Youth with Special Health Needs Section promotes and/or facilitates transition to adult health care for Youth with Special Health Care Needs (YSHCN), related to Got Transition’s Six Core Elements of Health Care TransitionTM 3.0. The scores below indicate the historical progress since 2016.
	0 Not Met	1 Partially met	2 Mostly met	3 Completely met
Transition and care policy/guide (core element #1)
Develop a CYSHNS transition policy/statement, with input from youth, families, and providers, that describes the approach to transition, including consent/assent information.	0 2016			3 2017
Educate all staff about the approach to transition, policy/statement, Six Core Elements, and roles of CYSHNS, youth/family, and pediatric/adult health care team in the transition process, taking into account cultural preferences.	0 2016	1 2017	2 2018	3 2019
Transition tracking and monitoring (core element #2)
Establish criteria and process for identifying and tracking transitioning youth in the CYSHNS database.	0 2016	1 2017-18		3 2019
Utilize individual flow sheet or database to track youth’s transition progress.		1 2016-18	2 2019/20	3 2022
Transition readiness (core element #3)
At least annually assess transition readiness with youth and parent/caregiver using the TRAC, beginning at age 12, to identify needs related to the youth managing their health care (self-care).	0 2016	1-1.5 2017-21		3 2022
Jointly develop goals & prioritized actions with youth & parent/caregiver, & document in a plan of care in the TRAC.		1-1.5 2016-19	2 2020-21	3 2022
Transition planning (core element #4)
At least annually update TRAC goals, in partnership with youth and families, including readiness assessment findings, goals, and prioritized actions.	0 2016	1 2017-21		3 2022
Prepare youth and parent/caregiver for adult approach to care before age 18, including legal changes in decision-making, privacy, and consent; self-advocacy; access to information; and insurance continuity.		1-1.5 2016-19	2 2020-22
Develop and implement referral procedures to adult service agencies.		1 2017	2 2018-19	3 2020
Transition transfer of care (core element #5)
Prepare youth and parent/caregiver for transferring to an adult health care provider and planning for health insurance coverage as an adult.		1-1.5 2017-19	2 2020-22
Transition completion (core element #6)
Contact youth and parent/caregiver when CYSHNS services end to confirm having an adult health care provider and health insurance coverage or provide further transition guidance.		1 2017	2 2018-21	3 2022
	2021 TOTAL = 31/33 (93.9% completion)

 

The activities for the Six Core Elements are anticipated to be completed in 2023. The focus for 2023 will then be on ensuring that all children aged 12-21 enrolled in CYSHNS receive health transition services. Training and support for staff will highlight the importance of completing health transition services for their caseload. Currently, a needs assessment of youth with special health needs and their families is being conducted by CDS to identify areas of need and will be used to develop new measures for transition to adult health care for 2024.

 

Strategy 2: Provide education and public awareness on transition to adult health care for children/youth with and without special health care needs and promote the incorporation of transition into planning and practices, in collaboration with state and community partners

This strategy focused on partnership activities to promote transition awareness among youth and their families and workforce training on transition planning practices for youth-serving organizations and health care providers. The partnership strategy reflected local input from stakeholders and community/agency partners.

 

Educational/Awareness Events: CYSHNS and youth and family members continued to conduct virtual annual educational transition fairs and events in FY2021-22 due to COVID restrictions.

 

The largest event for youth and families of CSHN is the annual Special Parent Information Network (SPIN) statewide conference, last held virtually in October 2021. SPIN is a statewide parent-to-parent organization established to enhance parents' participation for children with disabilities. SPIN provides information, support, and referral services. It is funded through a unique partnership between DOE and the Department of Health (DOH) Disability & Communication Access Board (DCAB). The conference is an important means to share key transition information with an estimated 400 family members and service providers who typically attend.

 

Other in-person family events canceled due to COVID in 2021-22 included: the Hawaii Summer Special Olympics, Malama da Mind (Hawaii Island), Kauai Legislative Forum, Kona Marshallese Day, and Kauai STEPS fair.

 

Partnerships & Networking: CYSHNS continued collaborating with a broad network of government and community groups that assist with systems coordination and advocacy for youth transition to adult health care. Key planning partners include: MCHB Adolescent Health Program (responsible for the Title V NPM 10), DOE, SPIN, DCAB, DOH Developmental Disabilities Division, NWD, Hawaii State Council on Developmental Disabilities, Hilopaʻa F2FHIC, Best Buddies Hawaii, MCH-LEND, Community Children's Council Office, Division of Vocational Rehabilitation, TeenLink Hawaii, and other community organizations.

 

In 2021-22, partnerships with the Kauai, West Hawaii, and Hilo Legislative Disability Forums provided another opportunity to share key transition messages with precinct/district legislators. The forums are sponsored and conducted by the HSCDD.

 

TeenLink Hawaii: In 2022, CYSHNS extended its contract with TeenLink Hawaii, an organization for youth and by youth that provides information and referral services for youth and young adults. Based on results from a needs assessment of youth and young adults conducted in early 2021, the TeenLink Hawaii young adult staff developed messaging for their website and Instagram site. Information on children with special health needs and transition to adult health care was added to the TeenLink Hawaii website (https://www.teenlinkhawaii.org/). A series of Instagram posts were developed on topics such as how to find an adult health care provider, make a medical appointment, fill out a medical history form, and types of medical specialists.

 

Kaiser Permanente: Through a partnership with the pediatric providers at Kaiser Permanente Hawaii (KPH), youth transition to adult health care was incorporated into the Kaiser Hawaii HMO system of care. With technical assistance from Got Transition and CYSHNS, KPH adopted the Six Core Elements of Health Care TransitionTM into their pediatric department services and used the Hilopaʻa Transition Workbook and CYSHNS TRAC, PATH, and Beach Flyer handouts for transition planning with youth in the KPH health care system. Hilopaʻa Transition Workbook is also used in the Kaiser Genetic Clinic and Behavioral Health Clinic. This partnership has expanded transition planning to a larger number of youth and young adults, as KPH is the second largest health insurer in Hawaii, caring for more than 250,000 members of all ages.

 

Title V Programs: Transition planning was incorporated into other CSHNB programs, including the Hawaii Community Genetics Clinics, the Early Language Working Group, and neighbor island cardiac, neurology, and nutrition clinics, as well as within MCHB-contracted adolescent programs.

 

Educational Materials: The CYSHNS Transition workgroup meets monthly to work on transition activities and outreach materials designed for populations with limited English proficiency or educational level limitations.

 

Strategy 3: Develop and expand efforts to address health disparities in transition services for youth

 

CDS Needs Assessment. The University of Hawaii Center for Disabilities Studies (UH-CDS) was contracted to conduct a needs assessment on youth with special health needs and their families. The 2018-2019 CSHCN data from the National Survey on Children’s Health (NSCH) was analyzed to identify key health issues. The findings were presented at the Pacific Rim International Conference on Disability and Diversity in February 2022 by CDS staff and Title V CYSHN staff.

 

Since the NSCH does not provide county-level data or detailed Hawaii-based race/ethnicity data, CDS designed a survey to reach out to youth with special health needs, including key underserved populations, to gain more data on these youth. The University IRB approved the survey and follow-up focus group questions, and implementation of the survey began in the summer of 2022. The survey was translated into Tagalog, Ilocano, and Hawaiian to gather more data from Filipino and Native Hawaiian youth.

 

The findings will be used to inform Title V priorities and strategies. Transition services, messaging, and outreach may be revised once the needs assessment process is completed and data analyzed.

 

CYSHNS will continue to seek and establish new partnerships to address health disparities, including Medicaid recipients and Native Hawaiian/Pacific Islander youth-related organizations. CYSHNS seeks to provide further training to its staff on diversity, equity, and inclusion strategies.

 

Current Year Highlights for FY 2023 (10/1/2022 – 6/30/23)

Effects of COVID-19: In 2022-23, CYSHNS services resumed with in-person services. Based on family preference, remote services can also be provided. In-person events and clinics that were canceled during COVID were reopened in 2021-22, including the Maui Cardiac Clinic, the Hilo Neurology Clinic, and the statewide Nutrition Clinics.

 

Online Referral: Referrals for CYSHNS services can now be made on the CYSHNS website. This will increase access to services and resources. Its release is timely to coincide with the Public Health Emergency unwinding.

 

Medicaid/EPSDT meeting: In January 2023, the state Medicaid program convened regular bi-monthly meetings with Medicaid health insurance plan EPSDT coordinators and state community partners. The CYSHNS Supervisor attends the meetings. An overview of FHSD programs and Title V priorities was presented at the first meeting. In subsequent meetings, CSHNB staff have presented on transition to adult healthcare, lead poisoning prevention, and developmental screening. Discussions have also focused on areas to improve services to CSHN by Medicaid.

 

Outreach Events: The annual SPIN statewide conference was held at the University of Hawaii at Manoa campus in April 2024 using an in-person and virtual format for the first time. CYSHNS was a member of the SPIN advisory board and helped plan this conference. CYSHNS staff participated as an exhibitor to provide information on healthcare transition, developmental screening, and lead poisoning prevention. There were 351 registered attendees and 52 resource tables. SPIN provided travel scholarships for neighbor island families to attend the conference.

 

The Footsteps to Transition Fair held in partnership with the Department of Education was virtually held in February 2023. CYSHNS staff participated on the planning committee and presented a session on youth transition to adult health care.

 

TeenLink Hawaii completed the CYSHN needs assessment survey and messaging campaign on transition to adult health care. They will continue to work on CYSHNS flyers and assessment tools to make them accessible online and appealing to youth. They will also be developing an online toolkit for adult transition information.

 

UH CDS Permission was secured to field the YSHN survey in state public schools special education classes beginning in the Fall 2022 semester into January 2023. Follow-up focus groups and individual meetings are being conducted to gather more detailed information.

 

Family Voices & AMCHP Transition Presentations At the national October 2022 Family Voices conference, CYSHNS and AHU, together with Family Voices and the Department of Education, presented on Hawaii’s unique agency partnership experience. Driven by traditional Hawaiian values, these dynamic partnerships support and engage youth and families statewide. The transition presentation was also presented at the May 2023 AMCHP conference.

 

Serteen Club of Hawaii CYSHNS will partner with TeenLink Hawaii and the Serteen Club of Hawaii to work on a project related to healthcare transition and adolescent health. Serteens is a youth group with members statewide focusing on leadership and community service. Planning meetings will begin in July 2023.

 

Review of Action Plan

A logic model was developed for NPM 12 to review alignment among the strategies, activities, measures, and desired outcomes. By working on the three strategy areas, Hawaii focused on increasing the percentage of adolescents receiving transition services.

 

Strategy 1 focused on integrating the Got Transition’s Six Core Elements of Health Care TransitionTM 3.0 into CYSHNS service protocols to ensure CYSHNS and their parents/caregivers prepare for the transition to adult health care.

 

Strategy 2 focused on public health education and awareness and supporting other youth services organizations to adopt adult transition planning into their services model.

 

The addition of Strategy 3 in 2021 focused critical attention on health inequities highlighted during the COVID pandemic. Investments in data collection and analysis will help target resources toward under-resourced populations and communities with health and social disparities.

 

Together, the strategies are designed to improve transition services, with greater adult transition readiness among youth, and increase the number of youths making successful transitions to adult care.

 

Challenges Encountered

COVID. As COVID pandemic restrictions were eased, then lifted in 2021-22, regular wellness visits returned. Many families attempted to catch up on past delayed medical visits, which included immunizations, developmental and mental health screenings, and transition to adult health care.

 

A trend noticed in CYSHNS was the decrease in enrollment during the pandemic. This could be due to more children enrolling in Medicaid. As the primary care provider for children with special health needs enrolled in the health plans, CYSHNS took a secondary role in case management.

 

With the Public Health Emergency (PHE) for COVID expiring in May 2023, there may be increased CYSHNS enrollment for case management services and financial assistance for medical care. In anticipation, CYSHNS staff have been trained on how to assist families in completing the redetermination process for Medicaid and CYSHNP enrollment. CYSHNS outreached to primary care providers, sending them current program information and resources, and reminding them that referrals can be made to the programs for services and case management. CYSHNS also sent included information from other FHSD programs, such as Home Visiting, Newborn Hearing Screening Program, Hawaii Lead Poisoning Prevention Program, and Early Intervention.

 

Family Engagement. For Strategy 2, COVID created enormous challenges to traditional in-person outreach efforts. Event evaluations confirm that participants value ready access to the large array of visible and available services/products in a personal client-centered environment. Many of these events were done in partnership with the state public school system (DOE), which shut down most traditional in-class/school experiences in 2020-2021 and offered limited services to special education students. Several of the larger events relating to outreach were rescheduled and conducted virtually as a result.

 

Data Limitations: The National Survey of Children's Health (NSCH) data and small sample size continue to be a challenge. The variability in the NPM 12 shows ostensibly substantive changes, but none are statistically significant; thus, it's difficult to determine whether the data reflects real change. At a time when child wellness visits decreased, transition planning data appears to show an increase. As noted in other narratives, the funding, administrative, and epi staffing barriers prohibit Hawaii from pursuing an NSCH oversample that could generate more stable estimates for NPM 12 or data on important ethnic disparities. Concerns were raised to the MCH Bureau for greater investments in the NSCH. Hawaii has pursued other primary methods of data collection.

 

The partnership with UH CDS will provide more state-specific data to better understand disparities that impact the YSHCN population in the state and consequences of COVID to help develop strategies/partnerships that target those groups and communities of greatest need.

 

Reaching All Youth. Highlighting the importance of transition planning for all youth, not just those with special health care needs, also remains a challenge; however, partnership with the Title V Adolescent Health Program has helped immeasurably, as well as partnerships with DOE and community youth groups.

 

Overall Impact

CYSHNS was successful in developing a system to help youth transition to adulthood. CYSHNS fully integrated transition planning into its standard program services. The program brochure, TRAC, PATH, and Footsteps to Transition flyers were developed by CYSHNS with continuous feedback from youth, families, staff, and partners. Along with the Hilopaʻa Transition Workbook, these tools have been valuable statewide in educating, developing, and tracking life goals as youth transition to adulthood. They are also widely used by system partners, including DOE, pediatricians, and health centers as part of their adult transition planning services. Collaboration with Kaiser Permanente Hawaii pediatric services to integrate transition into their system practices demonstrates the utility and ability to replicate CYSHNS protocols and practices. Partnership with the Adolescent Health Program and TeenLink Hawaii is helping to further strengthen family and youth engagement.

 

Another major success was the development of strong partnerships among service providers and agencies to help Hawaii youth transition to adulthood, as evidenced by the number of youth/family community events promoting transition, including the DOE hosted Footsteps to Transition fairs. Events are held annually across all counties and have expanded to include a comprehensive array of services and educational providers. In partnership with DOE, the Transition Fairs have created other outreach and educational events for public and adult healthcare providers and workforce training events for service providers. The success of many of these events and trainings involves a high level of family and youth engagement.