Children and Youth with Special Health care Needs – Annual Report
According to the 2019 MCH Jurisdictional Survey, 4.3% or 2,328 of Guam's children have a special healthcare need. Of those, 51.7% had a Medical Home during the past 12 months. Based on the Needs Assessment results, children and youth with special health care needs (CYSHCN) living in Guam face major barriers when accessing pediatric specialists and sub-specialists, primarily due to physician shortages long-travel distances.
For the CYSHCN domain, NPM 11: "Medical Home" was selected to align with the state's priority need to provide a whole-child approach to provide services to CYSHCN. To monitor progress towards addressing this priority and NPM, Guam developed two objectives: 1) To determine the extent to which Guam CYSHCN are receiving primary and specialty care and report that the care they are receiving is coordinated, accessible, continuous, comprehensive, compassionate, and culturally effective; 2) Increase family satisfaction with the communication among their children's doctors and other health professionals. Also selected was NPM 12: Transition to adult health care. One objective for NPM 12 is "Increase family satisfaction with the communication among their children's doctors and other health providers. Measurement of these objectives will be based on financial support from the Title V MCH Block Grant and an inventory of activities in which the MCH Program is involved.
The "Medical Home" is a concept started by the American Academy of Pediatrics to frame an approach to high-quality health care for Children and Youth with Special Health Care Needs. This approach seeks to assure that care and services are available and that children receive comprehensive health assessments. Medical home principles emphasize a team-based approach to care, which is especially crucial for children with multiple specialty providers. The team-based approach includes a shared, integrated plan of care and encourages the family to share in decision making. Medical home approaches to care are a key component to high-quality health care for CYSHCN.
In April 2020, Guam received a victory against the Social Security Administration, when the U.S. District Court found that Guam's exclusion from the SSI program as unconstitutional. The case was brought about by two sisters who were twins. Both twins lived in Pennsylvania received SSI benefits. When one twin moved to Guam, her SSI benefits were terminated.
In April 2020, the First Court of Appeals ruled in United States V Vaello Madero that the SSI law’s exclusion of Puerto Rican residents violated the Constitution, setting up a likely Supreme Court battle between the U.S. and territorial residents who are denied much-needed SSI benefits simply because of where they happen to live in the United States.
Health providers caring for CYSHCN are often faced with time constraints that limit their ability to assist families with navigating through complex health systems and identifying supportive community resources. This results in families being overwhelmed by the complexity of their child’s needs and lack of support and knowledge about available resources.
Optimal health and adequate health care are important in making successful transitions. The majority of YSHCN do not receive needed support to transition from pediatric to adult health care. Compared to youth without special health care needs, YSHCN is less likely to complete high school, attend college, or be employed.
Kariñu is Guam's Early Childhood System of Care (SOC) and the only program on the island that explicitly addresses the social-emotional development and mental health needs of young children ages birth-five years. Evaluation data has demonstrated that over 300 Kariñu children were provided mental health clinical and support services. These children displayed fewer challenging behaviors; caregivers reported significantly less stress. Also, numerous systems change activities were conducted through Kariñu: 53 trainings were conducted through Kariñu; 3 social workers gained licensure as clinicians with special training in early childhood mental health, and 49 interpreters gained skills to cultural competence.
Families must be involved to assure healthcare quality across health, education, and community systems. Current survey results show families rated care coordinators highly in terms of professionalism, politeness, communication, knowledge of the area of concern or question presented, ability to help with the concern or question, and follow-up. The majority of families' resources and referrals were found to be very helpful, and almost all families reported their needs had been met.
Guam's Families Health Information Resource Center (FHIRC) has been committed to promoting the Guam Special Needs Identification Project (SNIP) to register CYSHCN so that their special healthcare needs and map to their homes will be registered with the Guam Fire Department and the 911 Emergency Data System.
Almost 45% of Guam's population is 21 years old and younger, yet large parts of our relatively young Emergency Medical Services System are not prepared to address a child's requirements with special health care needs. Emergency care of infants/children with special health care needs is frequently complicated by a lack of a concise summary of their medical conditions, precautions needed, and special management plans.
Children with special health care needs have or are at risk for chronic physical, developmental, behavioral, or emotional conditions and require health and related services of a type or amount not usually needed by children. Children with a special healthcare need frequently require emergency care for acute-life threatening complications unique to their chronic conditions. Emergency hospital and prehospital care are negatively affected by a lack of accurate, timely information about their special needs and history.
Emergency data sets, summaries, or "passports" have been used in several U.S. Department of Health and Human Services, Maternal and Child Health Bureau, National Highway Traffic Safety Administration, Emergency Medical Services for Children (US DHHS-MCHB-NHTSA- EMSC) demonstration projects. The EMSC program has advocated the use of such emergency data.
Parents of children with special health care needs generally are extremely dedicated to the well-being of their children. Most of these parents are also medical caregivers and information resources for their children.
A child's need for extended medical attention tends to form powerful parent/child bonds. Yet, even when the most loving mothers and fathers cannot continuously remain at their child's side. Parents or caregivers also may not always be there to relay important medical information in an emergency.
In addition, when a child is sick or injured, even the best of parents cannot always be expected to report their child's long, complicated medical history concisely. Because of this, parents of children with special health care needs must have a mechanism in place to relay essential medical information about their child to emergency health care providers, regardless of their presence or immediate capabilities. The Special Needs Identification Project ("SNIP") is designed to be such a mechanism.
Shriners Hospitals' model for care was established by the Shriners, who are determined to give all children access to specialized pediatric care. The Shriners opened its first hospital in 1922 to provide care to children with polio, clubfoot, and other orthopedic conditions. There are 22 Shriners Hospitals for Children across the United States, Canada, and Mexico that provide care to children with burns, spinal cord injuries, cleft lips and palates, and other medical conditions.
In 2017, 2018, and 2019 the Guam MCH Children with Special Health Care Needs (CSHCN) satisfaction survey to find out from parents/caretakers of CSHCN about the quality of care they were receiving. These surveys are disturbed when DPHSS hosts the bi-annual Shriners Clinic.
Most agencies collect data on outcomes of the people they serve, but the data may not be specific to transition-age youth. Examples include the number of career readiness activities, wages, and hours worked per week. Some students have goals in an Individualized Education Plan focused on employment, community living, or managing health conditions.
These services are often designed for the entire population of people with disabilities, rather than being targeted to a certain age group of people. Services and supports available included information and referral, youth leadership training, and transportation (i.e., via regular bus, paratransit, or taxi). Most organizations do not currently offer resources specific to wellness, health, or health care. When asked to list two or three ideas to improve the transition to adulthood in Guam, suggestions generally fit into four categories: improved collaboration and care coordination, outreach to youth and families, resources for transition planning, and additional training opportunities.
Guam Department of Education (GDOE), in partnership with the University of Southern California, conducted a training to identify and assess young and school-age children with autism spectrum disorder (ASD). The training included on-site and off-site consultation to ensure competencies in administering, scoring, and diagnosing children with ASD using the Autism Diagnostic Observation Schedule 2nd Edition (ADSO - 2), 
considered the gold standard for observational assessment of ASD.
Autism spectrum disorder (ASD) and autism are general terms used to describe complex conditions that affect early brain development. It can be a lifelong debilitating disease if left untreated. Key features: deficits in social-emotional reciprocity, nonverbal communicative behaviors, difficulty developing, maintaining, understanding relationships, and displaying restricted, repetitive behaviors, interests, or activities (DSM-V).
Autism in Guam
Over 250 kids have been identified in the Guam Public School System alone, ages 3-21. This does not include those younger or older, nor does it consider children in private schools, home school, or the countless others waiting to be evaluated. Hunter Speaks produced a local. The PSA can be found at: https://youtu.be/dnjpLP7kjig Also produced was a film “Blue Island” which can be viewed at https://youtu.be/sFin96QWpOA.
Hunter Speaks Autism Organization autism center is “vital to the quality of life of children living with autism spectrum disorder and autism in our community.” The center first began accepting kids in November 2018 and billing health insurance providers under Hunter's Law as a means for long-term sustainability, the legislation states. Initial seed funding was used to cover the cost of training technicians, recruitment, and operational costs, and the center isn't expected to be entirely self-funded for another two years.
The mission of the organization is to “improve the standard of care for autism treatment on Guam, so that children affected by the disorder may receive the appropriate intervention they need and rightfully deserve.”
Their overall vision is to “establish a comprehensive autism center that provides intensive behavioral intervention as well as support services.”Ten individuals will start training in a 12-week program to become Registered Behavioral Technicians in January. Part of the training requires clinical hours, which they can get through a temporary center that will open in January to service 15-20 autistic kids.
Current insurance mandates under Hunter’s Law allows a maximum benefit of $50,000 per year for an eligible person only up to the age of 9 and limits the treatment of Autism Spectrum Disorder to a $25,000 maximum benefit per year for an eligible person who is between the ages of 9 and 21.
According to the Guam Autism Center and families that testified in support of Bill 66-35, most children on the spectrum require early intensive behavior intervention at roughly 25 to 40 hours per week and can make tremendous strides with it. The current stipulations only allow for an average of 15 to 17 hours of therapy a week for children zero (0) to nine (9) and merely half of that for those 9 to 21 years of age.
The island value of living in a spirit of togetherness and belonging was evident at the Pacific State Systemic Improvement (SSIP) Collaborative, as six Pacific entities convened to focus on improving the educational results of all students with disabilities in the Pacific. The six participating entities were: American Samoa, Commonwealth of the Northern Mariana Islands, Federated States of Micronesia, Guam, Republic of Palau, and Republic of the Marshall Islands. The overall goal of the collaborative is to improve the educational results of all students with disabilities in the Pacific entities by focusing on each entity’s capacity to increase the reading achievement of students with disabilities.
Guam System for Assistive Technology (GSAT) held an informational fair to showcase the 
community's advancements in technology and services. The fair allowed the public to network with service providers and learn about available services and programs. The theme of the fairs was "Assistive Technology: Leading Our 2020 Vision.
Strengthening the system of services for CYSHCN was determined as a state priority during the Title V MCH Needs Assessment conducted in 2015. The Title V MCH Program support CYSHCN and their families. The CYSHCN programs provide family-centered and community-based care and ensure early screening and diagnosis, access to a medical home, adequate insurance, and successful transition from pediatric to adult care services.
All teens need guidance and support as they transition to adulthood and assume responsibility for their well-being. Youth with Special Health Care Needs and their families are particularly vulnerable during this time, as youth must learn how to navigate a complex health care system, understand their condition, and stay healthy and manage their medications.
Success in these areas has a major impact on housing, employment, and education choices. Transition to adulthood is a process that ideally begins early and occurs over time. Youth and their family should be involved in all decisions. Care coordination between providers and services is essential.
In 2019, there were a total of 1,214 youth aged 16 and above with an IEP. Of the 1,214, 993 had an IEP that included coordination, measurable, annual IEP goals, and transition services that would enable them to meet their post-secondary goals.
DPHSS defines 'telehealth' as electronic information and telecommunications to support long-distance clinical health care, health-related education, and health administration. The department defines 'telemedicine' as the use of medical information exchanged from one site to another via electronic communication to improve the patient's clinical health status. Partnering with specialists and other telehealth entities has been an important driving force for the program. Guam CYSHCN held 35 telehealth sessions with Shriners Hospital, Hawaii.
A core Title V approach to enhance care systems for CYSHCN is to ensure early detection of special health care needs and timely linkage to treatment. A foundational strategy is to ensure high performing newborn screening programs for genetic conditions and early hearing loss.
Newborn screening identifies conditions that can affect a child's long-term health or survival. Early detection, diagnosis, and intervention can prevent death or disability and enable children to reach their full potential. Each year, millions of babies in the U.S. are routinely screened, using a few drops of blood from the newborn's heel, genetic, endocrine, and metabolic disorders, and are also tested for hearing loss before discharge from a hospital or birthing center.
Guam has approximately 3,500 births per year. Over 90% of these occur at Guam Memorial Hospital Authority. The remainder of the deliveries occurs at the U.S. Naval Hospital and Sagua Mañagu (Guam’s first private birthing center). Guam Memorial and Sagua Mañagu use the same laboratory to provide newborn screening results.
Guam Memorial currently contracts with Oregon Public Health Laboratory. The Guam Title V MCH Program tracks and follows abnormal results from Guam Memorial Hospital. Sagua Mañagu opened and began delivering babies in July 2000, and it reports and estimated 450 births per year. Sagua Mañagu sends their samples also to the Oregon Public Health Laboratory. The Medical Director sends copies of both normal and abnormal results to the infant's health care provider.
The U.S. Naval Hospital sends its newborn screening samples to Pediatrix, a commercial laboratory located in Pennsylvania. After the screening process is complete, all follow-up of newborn screening results is done by staff and when necessary, from Tripler Army Medical Center in Hawaii or the Naval Medical Center in San Diego.
The goal of newborn screening is to identify healthy infants with severe congenital disorders that are relatively prevalent and treatable. It originated with the work of Robert Guthrie in the 1960s for detecting the metabolic disorder phenylketonuria (PKU). Over the years, newborn screening programs have expanded to include other inherited diseases. Effective screening of newborns, combined with follow-up diagnostic confirmatory testing and treatment, helps prevent morbidity and mortality.
In 2017, there were 3,292 live births on Guam. All of the newborns received a blood spot screen. Of the 3,292 screens, 6% of the infants had a "presumptive positive" screen; after re-screening was completed, 4.2% had a confirmed case of a disorder.
In 2018, there were 3,175 live births on Guam. All of the newborns received a blood spot screen.
Of the 3,175 screens, 5% of the infants had a "presumptive positive" screen; after re-screening was completed, 4.4% had a confirmed disorder.
Experts agree that the benefits of newborn metabolic screening outweigh any risk. Newborn metabolic screening helps both parents and society as a whole. For many diseases, such as PKU, catching them early on means you can make dietary changes to make sure that your baby lives a healthy, everyday life.
The social workers of the Medical Social Services section under the Bureau of Family Health & Nursing Services successfully and effectively networked with the Maternal Child Health Program and the Guam Office of Minority Health of the Department of Public Health & Social Services, Guam's Alternative Lifestyle Association, Inc., the Western States Regional Hemophilia Network, the Nevada Hemostasis, and Thrombosis Center, and the Children's Hospital in Los Angeles, California to bring the 2019 Hemophilia Medical Symposium and Camp Hafa Adai events to fruition. The theme was “Celebrating the Past, Embracing the Future.”
The symposium presented various topics on new updates/therapies on bleeding disorders, the musculoskeletal ultrasound for the evaluation of hemophilia joint disease, and the use of Hemlibra subcutaneously and not involving intravenous injections of factor to manage and control bleeds. The camp featured the importance of patients receiving annual evaluations for their bleeding conditions. The GCHCP monthly clinics conduct such an assessment to prevent hospital emergencies and admissions. A session on learning how to infuse factor among the patients and their family members was extremely beneficial. It was exciting to see experienced patients teach the younger ones. This is one session always offered at camp. A hands-on activity for patients to learn about the various clotting factors and how they work to prevent bleeding was such an important one.
In addition to the educational sessions, an art session was also held. This involved learning to paint a canoe heading out towards the horizon, which served to portray the embracing part of the GCHCP's future theme. Physical activities are also an added benefit to the camp for promoting good health. Each morning, the physical therapists performed a stretching activity, and two of the camp days offer the campers an opportunity to swim at the hotel's pool.
Newborn hearing screening is the standard of care in hospitals nationwide. The program's purpose is to identify newborns who are likely to have hearing loss and require further evaluation. Another purpose of the program is to identify newborns with medical conditions that can cause late-onset hearing loss and establish a plan for continued monitoring of their hearing status.
The goals of the program are to provide the earliest possible assessment, referral, and intervention for newborns; screen all newborns for hearing loss before one month of age, preferably before hospital discharge; provide all infants who screen positive a diagnostic audiological evaluation before three months of age, and provide all infants identified with a hearing loss appropriate early intervention services before six months of age.
The Guam Early Hearing Detection Intervention (EHDI) project was established in 2002. Through the efforts of Guam EHDI, the Universal Newborn Hearing Screening, and Intervention Act, Public Law 27-150 was enacted into law in 2004. Guam's local legislation aligns with national goals and assures an upgraded standard of care for all babies born on Guam.
To Top
Narrative Search