Project: Puerto Rico Family-to-Family Center Applicant: Puerto Rico University Center for Excellence in Developmental Disabilities UPR Medical Science Campus, P.O. Box 365067 San Juan PR 00936-6067 Contact: Dr. Carol Salas-Pagán 787-754-4377; 787-758-2525 Ext. 1416 email@example.com Based on US Census 2019, 52,025 (approximately 12%) of children under 18 years old have special needs in Puerto Rico. CYSHCN usually requires a broad range of services in greater quantity than children without special needs to improve their health and functionality. Families usually struggle to find the services that their children need. One principle that underlies work with families of CYSHCN is that providing information, referrals and support will improve access to needed services and, therefore, improve outcomes. The Puerto Rico University Center for Excellence in Developmental Disabilities (PR-UCEDD) at the University of Puerto Rico Medical Science Campus works to fulfill its goal of improving access and quality of services to promote full participation of people with IDD in all aspects of the community and society. The PR-UCEDD seeks funding for the fiscal year 2022 for the continuation of the Family-to-Family Health Information Centers (F2F HIC) Program in Puerto Rico. The Annie E. Casey Foundation’s, 2021 Kids Count Data Book State Trends in Child Well-being index uses four domains to capture child well-being at the state and national levels: (1) Economic Well-Being, (2) Education, (3) Health and (4) Family and Community. The recently presented report shares the following highlights for PR: ? 536,000 (83%) of the children on the Island live in areas of high poverty (2015-2019) ? 323,000 (57%) of children lived in poverty in Puerto Rico (2019) ? 300,000 (52%) of children had parents with lack secure employment (2019) ? 24,000 (4%) of children reports no health insurance (2019) ? 2,054 (10.1%) were low birthweight babies (2019) Condition
s associated with prematurity and low birth weight continue to be among the first five causes of infant mortality on the island (US Department of Health and Human Services, 2019). According to Puerto Rico Department of Health Vital Statistics Data for 2019, 10.4% of live births had low birth weight or very low birth for gestational age and 65.6% (2,650) of children with birth anomalies received services at the Neonatal Intensive Care Unit (NICU) during 2019. In 2019, approximately 21.6% of the population of Puerto Rico, or 684,955 non-institutionalized persons, is estimated to have developmental and other disabilities. A study of the PR Health Department on CYSHCN (2019) identified 188,735 children in PR from 0 to 17 years of age with special needs. According to data in the Title V MCH Block Grant Program-State Snapshot FY2019, there were 176 families included in the Technology Dependent Children (TDC). The purpose of the PR Family-to-Family Center (PR-F2FC) is to provide information, education, technical assistance, and peer-to-peer support to families of children and youth with special health care needs, IDD and the professionals who serve them. Families of children and youth with special health care needs and IDD need to know how to navigate the healthcare system and need to be confident in how to collaborate with their healthcare providers. Because of the implementation of the proposed project, families of CYSHCN and IDD will participate more actively in the planning and the decision making related to treatments and services available at the community for their children.