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

For the Children with Special Health Care Needs (CSHCN) population domain, Hawaii selected NPM 12 Transition to Adult Health Care as a continuing priority, based on the results of the 2020 DOH 5-year needs assessment. By July 2025, the state seeks to increase the percent of youth with (and without) special health care needs who received transition services to 27%. Plans to address this objective and NPM are discussed below.

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

Transition and care policy/guide and Transition tracking and monitoring

• Although these policy/tracking/monitoring elements have been achieved, ongoing discussion and education of CYSHNS staff regarding data, policy, and procedures for transition is continuing via monthly transition meetings and new CYSHNS employee orientation.

Transition readiness

• CYSHNS will continue to obtain feedback from youth and parents/caregivers on recommended revisions to transition planning tools and revise as needed.

Transition planning

• CYSHNS will continue to evaluate the effectiveness of transition tools.
• CYSHNS is developing an improved system for receiving referrals into the CYSHNS program for youth and families seeking assistance with transitioning to adult health care.
• CYSHNS will have active participation in the NWD network of agencies.

Transition transfer of care

• CYSHNS will continue to offer support to CYSHNS-enrolled youth and parents/caregivers preparing for adult health care.
• CYSHNS will continue to document and address barriers to transition planning.

Transition completion

• CYSHNS will develop a scorecard or survey for youth and adult health care providers to verify transition completion to improve data collection and analysis.

Strategy 2: Provide education and public awareness on the 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

CYSHNS will continue to work with agency and community partners to modify outreach events and methods for effective youth/family engagement to deliver transition information and services. Although COVID restrictions have eased, in-person gatherings may continue to be restricted as COVID variants continue to spread. Virtual and hybrid means of connecting will continue since it helped broaden participation in CYSHNS events, especially for neighbor islands/rural areas.

CYSHNS will continue to identify new and emerging community partners to promote transition planning, including the Hawaii Afterschool Alliance, No Wrong Door information and referral system, health insurance plans, adult health care providers and others.

CYSHNS will continue to engage youth to assess and evaluate appropriate adult transition messaging through ongoing partnerships with the Title V Adolescent Health Program and TeenLink Hawaii. CYSHNS will continue to partner with youth agencies and health care providers to distribute/share adult transition information.

CYSHNS will continue to partner with organizations interested in integrating transition planning into their services, including care provider systems such as Kaiser Permanente Hawaii.

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

Needs assessment work with the University of Hawaii Center for Disabilities Studies is documenting the impact of COVID on CSHCN and their families, with a focus on disparity populations at increased risk for poor health outcomes (Native Hawaiians, Pacific Islanders, and Filipinos). Data from the National Survey on Children’s Health, coupled with the UHCDS survey and focus groups data, will yield important insights on emerging access issues and key disparities. The findings will be used to help further develop and define Title V priorities and strategies. Specifically, transition services, messaging, and outreach are expected to be revised given the findings of this study.

Title V CSHCN Programs

Children with Special Health Needs Branch (CSHNB) is working to assure that all CSHCN will reach optimal health, growth, and development. Programs include:

Birth Defects: Provides population-based surveillance and education for birth defects in Hawaii and monitors major structural and genetic birth defects that adversely affect health and development.

Childhood Lead Poisoning Prevention: Reduces children’s exposure to lead by strengthening blood lead testing and surveillance, identifying, and linking lead-exposed children to services and improving population-based interventions. The program is funded by the Centers for Disease Control and Prevention (CDC).

Children and Youth with Special Health Needs: Assists with service coordination, social work, nutrition, and other services for children with special health care needs, ages 0-21 years, who have or may have long-term or chronic health conditions that require specialized medical care and their families.

Early Childhood: Focuses on systems building to promote a comprehensive network of services and programs that helps children with special health needs and children who are at risk for chronic physical, developmental, behavioral, or emotional conditions reach their optimal developmental health.

Early Intervention Section: Provides early intervention services for eligible children, ages 0-3 years, with developmental delay or at biological risk as mandated by Part C of the Individuals with Disabilities Education Act. Services include: care coordination; family training, counseling, and home visiting; occupational therapy; physical therapy; psychology; social work; special instruction; and speech therapy. Parents/caregivers are coached on how to support the child’s development within the child’s daily routines and activities.

Genetics Services: Provides information and education about topics in genetics statewide and services to neighbor island families.

Hi‘ilei Developmental Screening: A free resource for parents of children from birth to 5 years old. The program provides developmental screening via a mail or online screen; activities to help a child develop; referrals for developmental concerns; and information about state/community resources.

Newborn Hearing Screening: Provides newborn hearing screening for babies as required by Hawaii state law to identify hearing loss early so that children can receive timely early intervention services.

Newborn Metabolic Screening: Provides newborn blood spot testing for babies as required by Hawaii state law. The tests help detect rare disorders that can cause serious health, developmental problems, and even death, if not treated early.