The Family Support and Healthcare Alliance Delaware (Family SHADE) is a collaborative alliance of family partners, 75+ organizations and agencies committed to improving the quality of life for children with disabilities and chronic medical/health conditions in Delaware by connecting families and providers to information, resources and services; advocating for solutions to recognized gaps in service; and supporting its member organizations.
Family SHADE members believe 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.
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 inFa 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.
DELAWARE DIVISION OF PUBLIC HEALTH, MATERNAL CHILD HEALTH BUREAU
Maternal Child Health Bureau’s Maternal (MCHB) and Child Health Block Grant program, Title V of the Social Security Act funding, is intended to improve the health of all mothers and children and provides or ensures prevention and primary care services for children, pregnant women, mothers and infants and children with special health care needs. The Office of Children with Special Health Care Needs provides statewide leadership through partnerships with key stakeholders including families, children and youth with special health care needs, as well as state and community organizations to improve the wellbeing of CYSHCN.
The Division of Public Health (DPH), Maternal Child Health Bureau funds Family SHADE as part of its efforts to improve the health and support for CYSHCN and their families in Delaware. Family SHADE partners with DPH by supporting their MCHB priorities. Some of the priorities are cross cutting issues that also affect children and youth with special health care needs such as physical activity oral health and bullying.
Family SHADE offers the following:
Support is provided in the following ways:
- Support for families of children and youth with special healthcare needs by helping them connect to the services, providers and information that improve their quality of life.
- Support for organizations who touch the lives of children and youth with special healthcare needs by supporting the network of providers. For a full list of organizations, please visit familyshade.org/members-and-membership.
- Website and Facebook Page: For more information about Family SHADE and resources, please visit familyshade.org and facebook.com/FamilySHADEofDE.
- Roadmap: A guide to starting points in early childhood, education, healthcare, and many other areas.
- Resource Database: A searchable database of over 10,000 Delaware resources. A mobile app to connect to the database is also available.
- Events and Activities: An up-to-date list of community events and recreation across the state.
- Information Line: 855-755-SHADE (7423); Staffed Mon–Fri, messages responded to within 24-48 hours; Staffed by some parents of children with special healthcare needs. PURPOSE: Help families and providers get connected to the agencies and organizations who can help them.
- Training/Technical Assistance: Training and technical assistance is provided on several topics including cultural competency, volunteers, grant writing, grant administration, use of social media and others.
- Networking Breakfasts and Membership Meetings: These meetings are held regularly throughout the year and are effective in building Family SHADE local and state networks throughout Delaware. Please feel free to join us at an upcoming Kent/Sussex event listed on our events page.