Children and Youth with Special Health Care Needs

The term “children and youth with special health care needs refer to a diverse population of young individuals with chronic conditions, medical complexity, and/or emotional or behavior conditions.” These conditions may reduce with age, be addressed through medical or behavioral interventions, or represent lifelong medical impact for the child and their family. These children and youth often benefit from services or supports beyond that required by the average child. These supports are not exclusive to the health care system but may include associated systems such as mental health, transportation assistance, additional medical supplies, and more.

To improve CYSHCN health outcomes, the Title V MCH Program selected NPM 11 and NPM 12. The Title V MCH Program sought to increase (1) the percent of children with special health care needs, ages 0 through 17, who have a medical home (NPM 11), and (2) the percent of adolescents with special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care (NPM 12). As stated in the 2019 MCH Jurisdictional Survey, 4.3% or 2,328 of Guam’s children are children with special health care needs. Health outcomes are anticipated to improve when children and youth have access to a medical home and successfully transitioned from pediatric to adult health care. Program activities and successes on these efforts are highlighted in the report, along with additional activities which support CYSHCN and their families in other areas.

As reported by the U.S. Department of Education, Data Warehouse for the School Year, the following students were served under Part B IDEA:

Family, consumer, and youth involvement, including families with CYSHCN, is a role or activity that enables those who have first-hand experience with systems of care to have direct and meaningful input into the health systems, policies, programs, and/or practices that affect service delivery and the health and wellness of children, youth, consumers, and families. This type of engagement is different from the vital role that families, consumers, and youth play in determining and controlling the array of services and support provided to them and requires additional preparation and ongoing support and development. Examples of family, consumer, and youth involvement include participation in advisory councils, document review, serving on committees, policy development, curriculum development, training, community action teams, and mentoring and support other families.

Shriner’s Hospital model for care was established by the Shriner’s, who are determined to give all children access to specialized pediatric care. The Shriner’s Hospital holds a biannual clinic in Guam and consultations approximately 300 children during their week-long visit. Unfortunately, due to the Covid 19 pandemic, there were no clinics held in 2020.

In 2017, 2018 and 2019, The Guam MCH Children with Special Health Care Needs was distributed to find out from parents/care takers of CYSHCN about the quality of services and care they were receiving.

Guam’s Family Health Information Resource Center (FHIRC) is a “One Stop Shop” for all CYSHCN and their families to obtain information, support, and assistance to meet their needs and, if needed, obtain referrals to other agencies and programs. The Guam FHIRC has assisted with the Shriners clinics by helping in making calls to the families to come in for their appointments.

The FHIRC also assists families in signing up for the Special Needs Identification Program (SNIP). SNIP is a collaborative effort between MCH, Guam EMSC, and the Guam Fire Department, so precious moments are not lost when an emergency occurs at the home of a child or youth with special health care needs.  An application is completed with the child’s baseline information and a map of their home. The family also completes an Intra agency Release of Information. Once everything is completed, GFD inputs the information into their 911 Emergency Data System. If a call occurs, GFD will readily have the information regarding the child/youth and a map to the house.

The Guam Comprehensive Hemophilia Care Program (GCHCP) recently celebrated its 20th anniversary of helping members of the small bleeding disorder community go from living their lives controlled by their bleeding disorder to controlling their bleeding disorder 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 on Guam, many individuals with a disorder missed school, missed work and social activities because of inadequate treatment.

Families and individuals are also more knowledgeable, thanks to GCHCP’s annual educational and recreational summer camp. In 2001, Camp Hafa Adai helped children and adults with bleeding disorders learn to manage their condition in a fun and supportive environment.

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 Hemophilia Medical Symposium was held on March 29, 2019, from 8:00 a.m. to 1:00 p.m. Camp Hafa Adai began on the evening of March 29 and concluded on March 31, 2019, at the Westin Resort Guam in Tumon, Guam.  The theme was “Celebrating the Past, Embracing the Future.” Due to the Covid 19 pandemic, there was no Hemophilia Medical Symposium or Camp Hafa Adai in 2020.

EHDI is a multi-partner screening and intervention system for children with hearing loss. The EHDI program maintains and supports a comprehensive, coordinated statewide screening and referral system. EHDI includes screening for hearing loss on all newborns in the birthing hospital; referral of those who do not pass hospital screening for rescreening; referral of those who do not pass the rescreening for diagnostic audiological evaluation; and linkage to appropriate intervention for babies diagnosed with hearing loss. The most crucial period for language development is the first year of life. Without newborn hearing screening, hearing loss is typically not identified until two years of age. Before discharge from the hospital or birthing center, screening all newborns is essential for the earliest possible identification of hearing loss. Consequently, for language, literacy, communication, and academic potential to be maximized.

As stated in EHDIs Annual Report (July 1, 2019 – June 30, 2020), There have been 104 infants identified with hearing loss since the Guam EHDI Project began in 2002. The Guam EHDI has maintained a 99% initial hearing screening rate from 2016 to 2018 at all civilian birthing sites. In 2019, the rate decreased to 98%.

Amid all the Covid 19 challenges that the medical community encountered, screening before discharge from the Guam Memorial Hospital Authority (GMHA) and Sagua Mañagu Birthing Center (SMBC). GMHA staff monitor and track the number of babies needing an outpatient hearing screening appointment and gathered the families’ contact information to assist Guam EHDI once outpatient hearing services can be resumed. The SMBC staff continued providing follow-up outpatient hearing screening appointments at their facility.

The Early Intervention program (Birth-Three) is also an integral part of our delivery care system, providing services to our Special Health Care Needs population. A very effective referral system has been in effect for many years between early childhood programs and the 0-3 program. The Guam Early Intervention System (GEIS), under the Guam Department of Education, Division of Special Education, provides services and support to young children birth to three years of age who have or are at risk for developmental delays and disabilities. Early intervention services are provided in the child’s home or community settings, such as child care centers, playgrounds, beaches, etc. The Universal Referral Form can be found at https://www.gdoe.net/files/user/1/file/Fillable_Universal%20Referral%20Form_09_2017.pdf

GEIS can help address developmental issues for these children by providing numerous services, including (but not limited to) developmental assessments, individual family service planning, home visits and therapy, parent education, and support, and service coordination with other local agencies. 

As with other programs, GEIS services were severely impacted by the Covid 19 pandemic. Since the first shut down in March 2020, face-to-face home visits have ceased, and services have been provided by telephone and/or teleconference. The program recently developed a Phase-in Plan to begin face-to-face services, including procedures following CDC requirements for social distancing and PPE requirements to ensure the safety of children and families and GEIS service providers and service coordinators. The plan was expected to begin sometime in 2021.

Health care transition is complex for those with chronic conditions; however, a successful transition lays the groundwork for successful, lifelong positive health outcomes. Health care transition is the process through which youth move from pediatric to adult-centered health care. Health care transition forms the framework for healthy adult outcomes through appropriate, sufficient and successful access to necessary preventive and condition-specific adult care.

As stated in the Department of Education Annual Performance Indicator, there were 159 post school outcome survey distributed, 149 were returned (93.7%).

In 2017, 2018 and 2019, The Guam MCH Children with Special Health Care Needs was distributed to find out from parents/care takers of CYSHCN about the quality of services and care they were receiving.

Recent decisions in two cases are described as signaling a “sea change” for Supplemental Security Income (SSI) benefits in the U.S. territories.  SSI is currently restricted to U.S. citizens living in the 50 states, the District of Columbia, and the Northern Mariana Islands.  In addition to Puerto Rico, other U.S. territories excluded from SSI are Guam, the U.S. Virgin Islands, and American Samoa. But in April 2020. an important First Circuit decision in the U.S. v. Vaello-Madero, 956 F.3d 12 (1st Cir. Apr. 10, 2020) finding it unconstitutional for the Social Security Administration (SSA) to deny SSI to otherwise qualified individuals based on their residence in Puerto Rico.

 On June 19, 2020, the Guam District Court followed much of the reasoning in the Puerto Rico decision, Vaello-Madero, in finding it unconstitutional for the plaintiff to be excluded from the SSI program based on her residency in Guam.  The exclusion was found to violate the equal protection clause in making an irrational distinction compared to the eligibility of residents of the Northern Mariana Islands. Schaller v. U.S. Social Security Admin., et al., No. 18-cv-00044)(D. Guam Jun. 19, 2020)(J. Tydingco-Gatewood). According to the Justice Department’s brief, the law that excludes Guam from the SSI program is constitutional, and Congress can treat the territories differently if there is a rational basis for doing so.

Including Guam and other territories in the SSI program would cost money, and Congress has the discretion to determine how federal funding is to be used, the Justice Department stated. Guam residents do not pay taxes to the federal government - their tax money remains with the local government – so they are not funding the SSI program and can reasonably be exempted, the Justice Department stated. The court is likely to hear and decide the case in its next term, which starts in October and ends in June 2022.