According to the U.S. Department of Health and Human Services, Health Resources and Service Administration (HRSA), Children and Youth with Special Health Care Needs (CYSHCN) are defined as – "Those who have or are at risk for a chronic physical, developmental, behavior, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally." CYSHCN is a diverse group with wide-ranging health concerns, such as chronic and acute conditions, including mental and behavioral health. The Title V Block Grant, through HRSA, requires at least 30% of Title V funding to be targeted for CYSHCN.

The priority need developed during the Five-Year Needs Assessment was "to provide a whole child approach to services to children and youth with special health care needs." Guam Title V chooses two National Performance Measures (NPMs) - NPM # 11, "Percent of children with and without special health care needs, ages 12 through 17, who have a medical home," and NPM #12, "Percent of Adolescents with and without special health care needs, ages 12 through 17, who received services to prepare for the transition to adult health care."

The percentage of Children with Special Health care Needs, ages 0-17, who have a medical home was 62% in 2022. The annual objective for reporting year 2022 was 62%, and the annual objective still needs to be met.

While many contributing factors potentially impacted this measure, the impact of Covid 19 created barriers to children accessing medical homes. In early 2022, pediatric offices and community health centers were closed. Despite these barriers to accessing pediatric primary care, the data for this NPM stayed relatively stable in Guam, from 61% to 62%.

Source: MCH Jurisdictional Survey

According to the MCH Children with Special Health Care Needs Survey, families of CYSHCN reported barriers in accessing healthcare practices (such as insurance referrals, urgent care access, and communication with the child's primary care physician), inability to access specialty care, communication with providers during and between visits to ensure that concerns were addressed. Lack of linkage to resources (transportation, respite care, educational and therapeutic resources). Lack of financial assistance with equipment, medications, or other needs not covered by insurance. Barriers for families whose primary language is not English or with low literacy levels.

Source: MCH CSHCN Survey

Guam Department of Education (GDOE) is a unified school district with early childhood programs and grades kindergarten through 12th grade. GDOE serves over 28,000 students across 26 Elementary schools, 8 Middle schools, 6 High schools, and one alternative school.

As a unitary educational system, GDOE serves as the U.S. Individuals with Disabilities Education Act (IDEA) and the State Educational Agency responsible for providing special education and related services for 1,170 children and youth with disabilities ages three through 21, representing approximately 5.9% of GDOE's student population. GDOE's identification rate is low, considering the national average is around 15%. Most preschoolers and school-age students with disabilities are in the classroom with their peers without disabilities in school settings.

 Source: GDOE Special Education

GDOE also serves as the lead agency for the IDEA Part C provisions for early intervention services for 143 eligible young children with disabilities aged birth to three years old, representing 1.65% of the Guam Census 2020 for the age group. Guam's overall identification rate for young children with disabilities continues to be lower than the national data. In the latest IDEA Part C Annual Performance Report, GDOE reported providing early intervention services for 1.13% of infants and toddlers birth to one, compared to the national average of 1.55% for the same age group. For the birth to tree age group, GDOE reported providing early intervention services for 1.65% of infants and toddlers, compared to the national data of 3.26% for the same age group.

Guam's Family Health Information Resource Center (FHIRC) is a "one-stop" center for all CYSHCN and their families to obtain information, support, and assistance to meet their needs and, if needed, get referrals to other agencies and/or programs.

Guam's FHIRC was initially located at the Northern Regional Community Health Center (NRCHC); however, FHIRC had to vacate the office during the pandemic, and the program moved to the MCH CYSHCN program. The partnership has many benefits, such as identifying, supporting, and recruiting families.

The Centers for Disease Control and Prevention’s (CDC) “Learn the Signs. Act Early” (LTSAE) Program aims to improve early identification of children with autism and other developmental disabilities so children and families can get the services and support they need. Guam’s CDC early Ambassador is actively promoting the "Learn the Signs. Act Early" initiative on the island. The initial training of the Guam Medical Society was conducted by a Developmental-Behavioral Pediatrician at Kapiolani Medical Center and the President of the Hawaii chapter of the American Academy of Pediatrics. There were nine physicians and 12 Service Providers that attended the 2-hour session. A local physician assisted the GELC in identifying a Champion in promoting the importance of developmental monitoring/surveillance and screening. This work moved forward with the training of 18 parents to become LTSAE Parent Advocates. Training on the updated CDC Developmental Milestones Checklist and Parent Engagement Developmental Monitoring was conducted with the following programs – WIC (21 staff), Childcare and Family Care (47 providers), and Parent Advocates (18 attendees).

An already existing committed collaboration of partners for children and families in Guam's Early Childhood Comprehensive System is led by the Guam Early Learning Council (GELC), established in 2008 by Executive Order and confirmed by Public Law 31-62 in 2011. The GELC supports the coordination and collaboration of agencies and organizations, both public and private, serving young children (birth to eight years old) and their families. Members of the GELC are parents and representatives from crucial child-serving agencies, including government agencies and private organizations.

The Guam Comprehensive Hemophilia Care Program (GCHCP) members of the small bleeding disorder community go from living their lives controlled by their bleeding disorders to controlling their bleeding disorders to live their lives. Better medical care has led to a better quality of life for Guam's families affected by bleeding disorders. Before the Hemophilia Treatment Center in Guam, many individuals with a disease missed school, work, and social activities because of inadequate treatment. There are 20 (16 males and four females) presently in the program.

In 1999, the Emergency Medical Services for Children (EMSC) Program created the Family Advisory Network (FAN) to facilitate the inclusion of family representatives in state EMSC programs. FAN aims to get parents' viewpoints, especially parents of children with special health care needs, involved in all aspects of pediatric emergency care. Today, the FAN membership includes family representatives from most states and U.S. Territories. The Guam Title V CYSHCN Social Worker is Guam's representative.

The EMSC Advisory Committee serves as a forum for issues that have a potential impact on the emergency care and transport of all pediatric patients in Guam; to educate prehospital providers, other health practitioners, and the general public regarding the provision of services available through the emergency medical services for children program; to formulate recommendations which reflect the interest and opinion of pediatric emergency care and injury prevention professionals. The EMSC Advisory Committee is a part of the EMS structure for advising the Guam Department of Public Health and Social Services. The Title V Program Manager is Sectary for the EMS Commission.

The Guam Early Hearing Detection and Intervention (Guam EHDI) Project has facilitated universal newborn hearing screening in Guam since 2008. The project has guided the development of a comprehensive and collaborative system in achieving a systematic process that ensures that all babies born in Guam receive a hearing screening before they leave their birthing facility. Guam EHDI has facilitated the implementation of the 1-3-6 requirement of screening all infants born on Guam for hearing loss by one month of age, receiving a diagnostic evaluation for infants who refer their outpatient by three months of age, and enrollment of infants identified with a hearing loss into early intervention services by six months of age.

Source: Guam EHDI

Over 20 percent of children aged 3–17 in the United States have at least one diagnosed mental, emotional, developmental, or behavioral condition. If untreated, these conditions can become more severe and affect long-term health and well-being outcomes in children and adults. These conditions can emerge in infancy and early childhood, heightening the importance of preventive measures and early identification in supporting long-term child well-being. According to the 2022 Maternal and Child Health Jurisdictional Survey in Guam, only 22.1% of children aged 3 through 17 years with a mental or behavioral condition received treatment or counseling. Among children identified with special health care needs, only 8.6% report receiving care in a well-functioning system, and among children and adolescents, 2.8% of those were not able to obtain the care they needed. A factor contributing to the gap between identifying and treating children's behavioral health disorders is the need for more services or treatment options in Guam.

There is a lack of growth in the workforce for child psychiatrists, developmental-behavioral pediatricians, advanced practice nurses in psychiatry or mental health, and child psychologists. The outlook for these professionals and their availability in Guam is even more dire. There are not locally based developmental-behavioral pediatricians or advanced practice nurses in psychiatry or mental health. The U.S. currently has 9.75 child psychiatrists per 100,000 children aged 0 to 19, a rate considerably lower than the recommended 47 child psychiatrists per 100,000. Guam continues to prioritize the recruitment of psychiatrists for Guam. However, recruitment for clinical professionals has historically been challenging within the territory and recently exacerbated by the COVID-19 pandemic.

Healthcare access and barriers are also relevant to understanding and addressing mental and behavioral health in Guam. In particular, the island's geographical isolation may limit expedient access to specialty mental healthcare and other specialty care essential for detecting and addressing risk drivers. While mental healthcare services are available in Guam (SEOW, 2021), local media reports have indicated concerns regarding the need for more psychiatric providers in Guam. For specialty healthcare offered outside of Guam (e.g., via telehealth or in-person), healthcare providers may be unfamiliar with cultural considerations germane to effectively providing care. Moreover, cultural norms (e.g., respect for older adults), attitudes (e.g., stigma), and beliefs (e.g., religious) regarding mental health may pose additional barriers to accessing services.

The Guam Pediatric Mental Health Care Access Project will work to address this multi-faceted issue.

The Guam Pediatric Mental Health Care Access Program (GPMHCAP) will build upon existing infrastructure to promote behavioral health integration into pediatric primary care. The goal will be to reduce healthcare disparities by creating greater accessibility to meaningful training and consultative information on pediatric behavioral health for primary care providers. To accomplish this goal, the GPMHCAP will develop a startup and implementation plan at the direction of an established Advisory Board. The Advisory Board shall consist of DPHSS, GBHWC, community clinics, and private pediatric primary care physicians.

The ChildLink Data System is being utilized and working well for the needs of our CYSHCN. We worked with the developer of ChildLink to build a new CYSHCN system combining all CYSHCN programs (FHIRC, Shriners, and Title V). Reports can be generated as needed or requested. The system developer is available for any "teaks" to the system, or any new fields requested.

The Birth to 5 data system composed of five siloed ChildLink data systems are not interoperable. Though a unique ID is assigned to a child, duplications continue, and service gaps still need to be solved. These young ones will enter the public school system and later either UOG, GCC or join the workforce. The information on early care and early education can help educators at all levels, and policymakers understand the efficacy of early interventions. As noted earlier, no longitudinal data is available for policymakers to make an informed assessment of whether they should continue to approve the funding or to legislate the expansion of, rescind, or further support previous policies discussed earlier, such as universal pre-K, socio-emotional learning for young children, and others.

On behalf of the Territory of Guam, the Joint Boards of Education (Joint Boards), the Guam Early Learning Council (GELC), and the Guam Department of Labor (GDOL), the Guam Department of Education (GDOE) is applying for $3.75 million from the Institute of Education Sciences (IES) to expand the island’s state longitudinal data system (SLDS) under Priority I: Infrastructure and Interoperability by integrating Birth to 5 (B5) data and initial workforce data in the Guam One Stop Data Village (GOSDV).   

The infrastructure build-up and the enabling of the interoperability of B5 and workforce data system with the GOSDV to build the B20W longitudinal data system in collaboration with the existing partners, namely the University of Guam (UOG) and the Guam Community College (GCC) and the new partners namely the Guam Department of Labor specifically the Bureau of Labor Statistics, the Guam Early Learning Council (GELC), the Department of Public Health and Social Services (DPHSS), specifically the Guam Preschool Development Grant Project (PDG-B5), and the Guam Interagency Coordinating Council (GICC) operating as the Guam Early Intervention System (GEIS).    The GOSDV will strengthen the partnership between and among these partners to provide quality information to policymakers, program planners, and decision-makers across the B5, early education, K12 through postsecondary and workforce spectrum. Including Birth to Five and initial Workforce data into the GOSDV will carry the acronym GOSDV ECHOES B20W, spelled out as the Guam One Stop Data Village Early Childhood Health, Outcomes in Education and Sustainable Workforce project.

As mentioned earlier, the lack of a comprehensive, interoperable early childhood data system has created gaps and adverse outcomes, such as (1) a significant proportion of children who are in or needing foster care are not able to avail of urgent health and education services, (2) inequity and disproportionality exist in the provision of early childhood services among the Compact of Free Association (COFA) children, and (3) lack of accessibility to services for vulnerable young children who come from low income, economically disadvantaged families, have low student achievement, have developmental delays and/or disabilities, who speak a language other than English, or who are at risk of poor outcomes, (4) there is no mechanism for tracking unduplicated number of children being served by early childhood programs (5) there is no interoperable system that shares information among programs.

Source: GDOE