Our Values Statement
Family SHADE believes in the provision of supports and services to families of children with special healthcare needs that foster (1) empowerment and not dependency; (2) equity and equality; and (3) an individually defined quality of life. In addition, caregivers must be viewed as experts in regard to their children within a context of self-determination and family culture.
Our Mission Statement
Delaware’s Family SHADE is a collaborative alliance of family partners and organizations committed to improving the quality of life for children and youth with special health care needs, and their caregivers, by connecting families and providers to information, resources and services; advocating for solutions to recognized gaps in services; and supporting its member organizations.
Special Healthcare Needs
Children with special health care needs (CYSHCN) are defined as those “who have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, Perrin JM, Shonkoff JP, Strickland B.; A new definition of children with special health care needs. Pediatrics. 1998;102(1 Pt 1):137-40.
One in five households with children in the United States includes at least one child with special health care needs. Nationwide, more than 13.5 million children—18.5 percent of all children under the age of 18—have special health care needs.
Children with special health care needs have a wide range of chronic illnesses, disabilities or emotional or behavioral health issues, such as severe asthma, autism, ADHD, cerebral palsy, cystic fibrosis, diabetes, Down syndrome, sensory impairments, sickle cell anemia and spina bifida. Families in every demographic group, including all income levels and ethnicities, have children with special health care needs.
Effective family support of CYSHCN requires a multi-faceted, family-centered approach. Family SHADE works with committed partner organizations (either formal organizations or parent groups) to ensure that parents, siblings and extended families have the resources, information, and social and emotional support to care for children with special needs.