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 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 policy

• Continue to include transition to adult health care in all aspects of CYSHNS services to make it a familiar and friendly concept.
• Continue educating CYSHNS staff regarding policy and procedures for transition, through monthly transition meetings and new employee orientation.

Transition tracking and monitoring

• The TRAC was finalized. Administer the TRAC to track and monitor the progress of transition activities.
• The upgrade of the CYSHNS client database to an Access system is complete. Provide access to the new system to all CYSHNS staff, including those on the neighbor islands.

Transition readiness

• Continue to revise the PATH, TRAC, and Beach flyer in response to changing focus and needs of youth and families.
• Obtain feedback from youth and families when reviewing the various assessment and planning tools.

Transition planning

• Implement procedures and talking points for using the TRAC and PATH as part of a youth’s transition planning process.
• Develop a system for receiving referrals into the CYSHNS program, for families seeking assistance with transitioning to adult health care.
• Continue participation in the NWD network of agencies.
• Continue to partner with youth agencies and health care providers in distributing information on transition to adult health care.

Transition transfer of care

• Continue work toward helping CYSHNS-enrolled youth and families prepare for adult health care.

Transition completion

• Research ways of ensuring completion of transition, and ways of documenting and quantifying completion.
• Develop a scorecard or survey to give to the adult health care providers to verify transition completion.

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 on the transition poster project with the purpose of educating all youth on the importance of transition to adult health care. CYSHNS will conduct focus groups to help develop and get input on the transition poster project.

CYSHNS will continue involvement in outreach and education events for youth with and without special health care needs and their families. Events include DOE-hosted Transition Fairs, the annual statewide SPIN Conference, Special Olympics, Malama da Mind, legislative forums, Marshallese Day, Healthy From Head to Toe, You Can’t Have Inclusion Without Us, Parent Child Fair, and Keiki Steps.

All in-person events/services are currently on hold due to the COVID-19 pandemic. Even as the stay-at-home order is being eased, in-person group meetings may continue to be restricted unless essential, and only under conditions safe for both families and providers. Other means of conducting focus groups or group events will need to be considered, using virtual or remote technology.

CYSHNS will continue to partner with the MCHB Adolescent Health Program to increase outreach to all adolescents, with and without special health care needs.

CYSHNS will continue to partner with Kaiser Permanente Hawaii to integrate transition to adult health care planning services into their system of care. CYSHNS will continue to provide technical assistance, based on lessons learned from developing transition planning organizational practices and standards.

Title V CSHCN Programs

Children with Special Health Needs Branch (CSHNB) is working to assure that all children and youth with special health care needs (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. 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, with chronic medical conditions. It serves children 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, to 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, 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. 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.