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

 

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 results of the five-year needs assessment. By July 2020, the state sought to increase the percentage of youth who received transition services to 25% for youth with and without special healthcare needs.

 

Data: Aggregated 2018-2019 data show that the Hawaii (17.1%) did not meet the 2020 state objective (25.0%) but was similar to the national estimate of 22.9% for youth with special healthcare needs. Hawaii did not meet the related HP 2020 objective (no age range specified) to increase the proportion of youth with special healthcare needs engaged in transition planning with a healthcare provider to 45.3%. The estimates for Hawaii (18.5%) and the nation (16.9%) were not statistically different. There were no significant differences in subgroups by household income poverty level, nativity, race/ethnicity, sex, and household structure based on the 2018-2019 data provided.

 

Objectives: Based on the 2020 needs assessment, Hawaii will continue with transition to adult healthcare as a priority for youth with and without special needs. A review of the data for NPM 12 shows a significant improvement in transition planning for adolescents in general but not for CSHCN. The state objectives through 2026 have been updated to reflect a 10% improvement over five years. The related HP 2030 objective for this measure is under development.

 

Optimal health and adequate healthcare are important for youth to successfully transition to adult healthcare. The majority of CSHCN do not receive the needed support for transition. When compared to youth without special healthcare needs, CSHCN are less likely to complete high school, attend college, or be employed; thus, transition planning can help reduce these disparities and lead to greater success in adult life.

 

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. 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 NPM 10 activities to promote adolescent wellness visits. The team meets monthly via Zoom.

 

Title V does not directly fund transition activities but does fund key CYSHNS staff including the Section Audiologist and Nutritionist. Both positions provide leadership for the Transition team. 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 organizations in Hawaii actively support and promote transition to adult life, including the American Academy of Pediatrics-Hawaii Chapter and Hilopaʻa Family to Family Health Information Center (F2FHIC). F2FHIC trains medical providers, professionals, and families statewide in transition planning. A statewide network of youth agencies and programs collaborate on annual transition activities and events, including the Hawaii State Council on Developmental Disabilities and Hawaii State Department of Education (DOE).

 

Strategies: Hawaii has two strategies for transition:

• Incorporate transition planning into CYSHNS service coordination for enrolled youths and their families; and
• Provide education and public awareness on transition to adult healthcare and promote the incorporation of transition services into organizational practices, in collaboration with state and community partners.

 

The first strategy is assessed by a scale to monitor progress on the integration of transition planning into the CYSHNS practices/protocol and serves as the NPM 12 strategy measure (ESM 1212).

 

Evidence: Hawaii’s two transition strategies are based on the 2015 Title V needs assessment; Association of Maternal and Child Health Programs (AMCHP) NPM 12 Toolkit; MCH Evidence Center; MCH Workforce Development Center technical assistance; Got Transition website; and 2020 Federal Youth Transition Plan and national best practices and recommendations from Centers for Medicare and Medicaid Services (CMS) 2014 report titled, Paving the Road to Good Health. Progress on the strategies is described below. The Evidence Center indicates Hawaii’s ESM to have ‘moderate evidence’ related to the use of the national core elements for transition.

 

Strategy 1: Incorporate transition planning into CYSHNS service coordination for CYSHNS-enrolled youth and their families

 

COVID Impacts: The pandemic had dramatic and significant impacts on CYSHNS operations, services, and client needs. The emergency orders in March 2020 resulted in most staff teleworking from home as only essential workers were permitted to commute to worksites. All in-person services continued through remote means (telephone or Zoom). All in-person CYSHNS neighbor island clinics were canceled, as interisland travel was suspended. Nutrition clinics for all islands continued through telehealth.

 

With most staff now accustomed to using Zoom, the pivot to telehealth was relatively easy. Some families, however, needed technical support and assistance adjusting to using telehealth. Some rural families had connectivity issues due to their remote location. Staff also witnessed the shift in clients’ needs to necessities such as food, diapers, and rent/income assistance. Generally, the request for CYSHNS services during the pandemic decreased. Engaging families proved challenging, given changing priorities, so provision of transition services significantly declined. Family visits to their primary care physician (PCP) and medical specialists also decreased as in-person visits to healthcare providers were limited.

 

Core Elements: CYSHNS transition to adult healthcare efforts are guided by Got Transition’s Six Core Elements of Health Care TransitionTM. The Core Elements are integrated into CYSHNS policies and procedures for youth and their parents/caregivers receiving CYSHN services for transition to adult healthcare. In 2020, a new Version 3.0 of the Core Elements was introduced to align with national guidance from professional medical organizations. However, the new version had little impact on CYSHNS protocols.

 

Core Element 1: Transition and Care Policy/Guide

The activities for this element focused on developing a CYSHNS transition policy and education for all staff on the transition policy and procedures. These activities were completed in 2020. The CYSHNS Transition Policy is posted on the CSHNB website: http://health.hawaii.gov/cshcn/home/communitypage/. All CYSHNS staff were educated on transition approach, policy, the Core Elements, and the roles of CYSHNS, youth/family, and pediatric/adult healthcare teams in the transition process. Staff were also educated on Title V’s overall leadership role to improve MCH population health, including CSHN. Training content and program guidelines now also include the importance of cultural considerations. The information is included in new employee orientation.

 

Core Element 2: Tracking and Monitoring

The activities for this element establish a process to track progress on transitioning youth in the CSHNP client database. Update of the database is completed; however, only Oahu staff have direct access to the transition information in the database. Efforts to extend access to statewide staff, including those on the neighbor islands, were delayed due to the pandemic.

 

Core Element 3: Transition Readiness

This core element activities ensure CYSHNS staff will meet with youth beginning at age 12-16 and parents/caregivers at least annually to assess transition readiness, progress, and to identify needs related to the youth’s ability to manage his/her adult healthcare. Due to COVID-19, the implementation of transition readiness activities declined in FY 2020 since priorities for most youth and families shifted to more urgent daily needs, such as virus-related health/safety, educational/childcare supports, rental assistance/income stability, and accessing care for the most critical healthcare needs. Transition readiness activities were provided only for youth who needed to transition to adult healthcare because they were being discharged from the program.

 

CYSHNS staff continued to utilize transition tools to guide youth and parents/caregivers through the transition process. The materials were developed with youth/family input. These tools include:

• Transition Readiness Assessment Checklist (TRAC) assesses a youth’s readiness level for transition to adult healthcare and allows the youth to select activities to help prepare for transition.
• My Path to Adult Health Care (PATH) is a visual flowchart of activities to guide youth in the transition to adult healthcare that promotes responsibility and self-advocacy in the areas of health habits, engaging healthcare providers, medications, health insurance, and adult healthcare.

 

Other providers are also using the materials to support transition planning including community hospitals and pediatricians, Kaiser Permanente Hawaii’s pediatric practices, and Tripler Army Medical Center.

 

The Follow Your Path to a Healthy Adulthood handout is an educational flyer that provides a visual illustration of steps that can be taken to reach transition goals and can be distributed at events, such as health fairs.

 

Core Element 4: Transition Planning

The key activities for this core element assure transition planning is being conducted effectively by reviewing and updating the TRAC goals annually with youth/families to prepare youth to begin focusing on adult healthcare providers, health insurance, and personal responsibility.

 

As with Core Element 3, this activity was placed on hold during FY 2020 due to COVID-19 restrictions. Some staff have attempted to conduct assessment through mail or virtual visits but have reported reluctance from youth to participate in the activity. Staff will again attempt to complete this activity at a later time when youth are less stressed by COVID-19-related concerns.

 

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

The above activities culminate with youth and their parents/caregivers successfully transitioning to adult healthcare providers. Staff provide guidance, resources, and training to help youth apply for health insurance coverage as an adult, select adult healthcare providers, and manage their adult healthcare.

 

CYSHNS staff also assists with referrals to partnering adult service agencies through networks such as the state’s No Wrong Door (NWD) program, which is an integrated person-centered system that supports individuals of all ages, disabilities, and payers. NWD’s referral system provides a universal intake point for access to care.

 

From the start of the COVID-19 pandemic, transition to adult healthcare was addressed only if it was necessary for ongoing medical care. As noted earlier, the CYSHNS staff communicated with youth and families by mail or virtually to make sure their medical needs were met.

 

ESM 12.1 Degree to which the Title V Children and Youth with Special Health Needs Section promotes and/or facilitates transition to adult healthcare 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			17	21	24	26	28	30	33
Annual Indicator	12	13	18	22	24.5

 

Strategy Measure Progress: ESM 12.1 measures the progress of CYSHNS work under Strategy 1. The rating scale has 11 strategy items 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 2020, the ESM 12.1 score was 26.5 (80.3% completion), exceeding the annual target score of 24. The FFY 2020 indicator shows progress over the past year of 4 points, from the FFY 2019 indicator of 22.

 

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 healthcare 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 2017-20
Educate all staff about the approach to transition, policy/statement, Six Core Elements, and roles of CYSHNS, youth/family, and pediatric/adult healthcare team in the transition process, taking into account cultural preferences.	0 2016	1 2017	2 2018	3 2019-20
Transition tracking and monitoring (core element #2)
Establish criteria and process for identifying and tracking transitioning youth in the CSHNP database.	0 2016	1 2017-18		3 2019-20
Utilize individual flow sheet or database to track youth’s transition progress.		1 2016-18	2 2019/20
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 his/her healthcare (self-care).	0 2016	1-1.5 2017-20
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
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 2017-20
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
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 healthcare provider and planning for health insurance coverage as an adult.		1-1.5 2017-19	2 2020
Transition completion (core element #6)
Contact youth and parent/caregiver, when CYSHNS services end, to confirm having an adult healthcare provider and health insurance coverage or provide further transition guidance.		1 2017	2 2018-20
	2020 TOTAL = 24.5/33 (80.3% completion)

 

Strategy 2: Provide education and public awareness on transition to adult healthcare for children/youth with and without special healthcare 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/families and workforce training on transition planning practices to youth organizations. The partnership strategy reflects local input from stakeholders and community/agency partners.

 

Educational/Awareness Events: CYSHNS, along with youth and family members, planned to continue multiple collaborations to conduct annual educational transition fairs and events through FY2020. However, with the advent of COVID-19 restrictions, most in-person transition outreach events to families/youth with special health needs were canceled or switched to virtual events. The in-person Oahu 2020 Transition Fair was changed to a statewide virtual event with participation from over 40 state and community agencies. One of the partners for the transition fairs is the state Department of Education (DOE), which worked towards having teachers, students, and families rapidly pivot to remote learning.

 

The largest event for youth and families of special need children is the annual Special Parent Information Network (SPIN) statewide conference, which is normally scheduled for April bit was postponed to FY 2021. SPIN is a statewide parent-to-parent organization established to enhance the participation of parents of children with disabilities in the decision-making process for their child’s education. SPIN continued to provide information, support, and referrals for parents of children and young adults with disabilities, as well as service professionals throughout 2020, via its website and newsletters. 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 transition information with the 400 family members and service providers who typically attend. Other family events that were canceled included the Hawaii Summer Special Olympics, Malama da Mind (Hawaii Island), Kauai’s Legislative Forum, Kona’s Marshallese Day, Healthy From Head to Toe, You Can’t Have Inclusion Without Us, Parent Child Fair, and Keiki Steps.

 

Partnerships & Networking: CYSHNS connected to a broad network of government and community groups that help with systems coordination and advocacy for healthcare transition. Key planning partners included: 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, Hawaii Maternal Child Health Leadership Education in Neurodevelopmental & Related Disabilities (MCH-LEND), Community Children's Council Office, Division of Vocational Rehabilitation, and other organizations. In 2020, the Kauai, West Hawaii, and Hilo Legislative Disability Forums also became network partners, providing another opportunity to share transition messages.

 

Organizational Practices: Transition planning has been incorporated into other CSHNB programs, including Hawaii Community Genetics Clinics, Early Language Working Group, and neighbor island cardiac, neurology, and nutrition clinics, as well as at MCHB-contracted adolescent residential facilities through their federal Personal Responsibility Education Program (PREP) grant.

 

The MCHB Adolescent Health Program has also integrated transition planning into the PREP program curriculum for at-risk and incarcerated youth living in residential facilities. The TRAC and PATH are used along with transition planning for employment and education. Because of COVID-19 stay-at-home orders, youth in the residential facilities were not allowed to leave the campus, nor were guests allowed to enter. This restriction provided an opportunity for staff to engage incarcerated youth in planning for their future, which includes adult healthcare.

 

CYSHNS formed a new partnership with the pediatric group at Kaiser Permanente Hawaii (KPH) to incorporate transition to adult healthcare into their HMO system of care. KPH adopted Six Core Elements of Health Care TransitionTM into their pediatric department services and uses the TRAC and PATH handouts for patient planning with all youth in their healthcare system. This partnership will expand transition planning to a significant number of adolescents since KPH is the second-largest health insurer in Hawaii, insuring more than 250,000 members. In July 2020, training on ‘supported decision-making’ was held in collaboration with KPH, CYSHNS, State Council on Developmental Disabilities, and Hilopaʻa F2FHIC.

 

Educational Materials: The CYSHNS Transition workgroup continued to meet monthly to work on outreach materials that can be understood across the literacy spectrum for populations with ESL or educational level limitations.

 

In partnership with MCHB Adolescent Health Program, TRAC, PATH, and Footsteps to Transition flyer materials were revised to include information on the importance of having a medical home and annual wellness visits. MCHB is disseminating these materials through their youth service programs and partners.

 

CYSHNS continued to work with the National MCH Workforce Development Center (WDC) to develop a transition informational campaign, following the completion of its 2019 cohort training with other states.

 

Current Year Highlights for FY 2021 through June 2021

Effects of COVID-19: CYSHNS services and activities continued through the COVID-19 pandemic with frequent modifications based on vaccination and disease rates, as well as the loosening of COVID restrictions. CYSHNS continued to telework from home through most of 2021 but are beginning to return to the office. All client services continued through remote means (i.e., phone, Zoom).

• Challenges and needs for families continue to focus on daily subsistence needs such as food, diapers, and rent/income assistance.
• Requests for CYSHNS services in 2021 have remained low, below 2019 levels.

 

Many preventive wellness visits were postponed during this COVID period. When wellness visits do occur, the focus has been on routine healthcare and maintaining immunization schedules; thus, transitioning to adult healthcare may not be a high priority for providers to address at this time.

 

All in-person events/clinics continue to be adversely affected by COVID:

• All in-person CYSHNS neighbor island clinics were canceled at the start of the pandemic. Nutrition clinics for all islands continued through telehealth.
• In October 2020, Maui restarted their Cardiac Clinics through telehealth.

 

Outreach Events: The annual SPIN statewide conference was rescheduled from April to October 2020, switching to a virtual format. Recordings of informational sessions are available online. One benefit of conducting a virtual SPIN conference is greater participation by neighbor island and rural families. CYSHNS participated in the SPIN advisory board for its annual statewide conference planning.

 

The virtual Footsteps to Transition Fair in Honolulu scheduled for October 2020 was postponed to Spring 2022.

 

New Partnerships: Surplus funds from reduced service provision was used to execute several contracts for assessment and messaging development. A contract with the University of Hawaii Center for Disabilities Studies will conduct ongoing assessment to document COVID impacts on CSHN and their families, using both primary and secondary data sources. Another contract was executed to partner with TeenLink Hawaii to develop messaging for youth, by youth on transition to adult healthcare for children with special health needs. A youth survey was developed to collect information on youth healthcare knowledge, ability to access care/health information, and COVID impacts on routine care. The TeenLink survey will be disseminated for data collection in early Fall 2021.

 

Through the Community Children’s Council, a new partnership has been formed with HMSA’s Medicaid case managers to develop a transition toolkit. This toolkit will be shared with other Medicaid insurance plans.

 

Review of Action Plan for FFY 2020

A logic model was developed for NPM 12 to review alignment among the strategies, activities, measures, and desired outcomes. By working on the two strategy areas, Hawaii focused on increasing the percentage of adolescents receiving transition services; however, the pandemic reduced the number of youths 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 that youth enrolled in CYSHNS and their parents/caregivers, prepare for the transition to adult healthcare. This framework identifies the different planning components that need to be addressed. CYSHNS developed and established a program system of standardized policies and procedures, materials, and data collection methods that can be used by other agencies, healthcare providers, and community groups working with youth and transition.

 

Strategy 2 focused on public health education and awareness and supporting other youth servicing organizations to integrate transition planning into their service model through partnerships and networking.

 

In addition to assuring continual improvements in the ESM 12.1 and NPM 12, long-term outcomes included:

• Improvement in transition services offered by providers, systems, and networks;
• Among youth – greater transition readiness, independence, and empowerment; and
• Evidence of more youth making successful transitions to adult care.

 

Challenges encountered

The major challenge for 2020 and into 2021 has been overcoming barriers to care created by the pandemic. Many families delayed accessing healthcare during the pandemic for many reasons. The decrease in client-served numbers for direct services provided by CYSHNS and other Title V programs is a reflection of this problem.

 

CYSHN staff experienced some challenges with service provision during COVID restrictions:

• Staff have reported youth were reluctant to participate in transition assessment and planning.
• The traditional utilization of paper assessments and goal-setting forms did not interest the youth accustomed to electronic media.

 

CYSHNS is using this input to explore new ways of engaging and educating youth in transition planning. A future project is planned to conduct a needs assessment of youth to identify their preferred platforms for receiving information through social media, websites, phone applications, or written material. Transition assessment and educational material would then be developed and presented through these youth-endorsed platforms. Youth engagement is important in developing educational material for youth, by youth. A strong partnership with youth groups is needed to increase their involvement to benefit from their input.

 

Although CYSHNS staff made the shift to telehealth services, access to reliable internet connections and devices remained a challenge for some client populations and communities, especially in rural areas. Hawaii is creating another new state priority to help expand access to telehealth hubs in underserved/rural communities, which may also help increase access to CYSHN services.

 

The COVID pandemic also amplified the reality of health disparities in the state. CYSHNS is creating a health equity strategy to focus on assessment and is expanding engagement with community groups to help address these disparities.

 

CYSHNS will also complete work to expand the client transition tracking features in the program database to all staff statewide. Access for neighbor island staff is scheduled to begin in August 2021.

 

For Strategy 2, COVID provided enormous challenges to traditional outreach in-person efforts where youth/parents could readily access and learn about available services and products in a comfortable client-centered environment. Many of these events were done in partnership with the state public school system, which shut down and offered limited services to special education students. Several of the larger events were rescheduled and conducted virtually.

 

Although many strong partnerships have been established over the last five years around transition planning, a major challenge remains identifying and establishing partnerships specifically with adult healthcare providers/agencies to access and also encourage transition of youth to adult healthcare, especially among healthcare specialists. More partnerships with healthcare providers/organizations like the KPH collaboration are needed including health insurers, Medicaid, and physician networks.

 

To expand collaboration across sectors, the challenge has been highlighting the importance of transition planning for all youths, not just those with special healthcare needs. CYSHNS will continue to identify community partners and work with them in promoting transition planning in their populations. Potential partners are TeenLink Hawaii, Hawaii Afterschool Alliance, HMSA MedQUEST, AlohaCare, Leadership in Disabilities and Achievements of Hawaii (LDAH), and the Center for Disabilities Studies.

 

Another challenge has been developing methods to measure the effectiveness of health education and awareness activities. As part of the new database revision, fields will be added to capture community events, education, and community outreach for transition.  CYSHNS will research tools to quantify outcomes with assistance from the national Got Transition program, MCH Evidence Center, and MCH WDC. The recent release of Got Transition 3.0 in 2020 is filled with helpful tools and implementation guides. CYSHN staff will review this new resource to update and revise their transition activities.

 

Technical assistance has been sought to design more effective messaging and outreach methods to reach youth, including the use of social media and technology. Guidance from MCH WDC helped address this need by providing staff with knowledge and tools around health communication strategies and project management. The partnership with the MCHB Adolescent Health program also helped to address this concern by sharing resources and connecting with their network of youth service partners.

 

Overall impact

Over the past five years, CYSHNS was successful in developing a system to help youth transition to adulthood. CYSHNS fully integrated transition planning into its standard program services. The transition workbook, program brochure, TRAC, PATH, and Footsteps to Transition flyer were developed by CYSHNS with continuous feedback from youth, families, staff, and partners. These tools have been valuable to educate, develop, and track life goals as youth transition to adulthood.

 

These resources are also now widely used by system partners including DOE, pediatricians, health centers, and the Hawaii military healthcare system as part of their transition planning services. The recent collaboration that was established with Kaiser pediatric services to integrate transition into their system practices demonstrates the utility and ability to replicate CYSHNS protocols and practices. CYSHNS is exploring the development of a formal transition toolkit for use by other healthcare/youth-serving organizations.

 

Another major success has been 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 aimed at 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, as well as workforce training events for providers. The planning for many of these events and trainings involve a high level of family and youth participation and input.

 

The CYSHNS staff benefited from FHSD investments in telehealth equipment, software and, training and were already regular Zoom users when the pandemic shutdowns occurred. CYSHCN staff made the switch to telework and telehealth services with relative ease and were able to help families with the changes. The Genetics program developed family-friendly educational videos to help clients transition to using telehealth.