Guest author, Allison Gray, MA, from the Lucile Packard Foundation for Children’s Health, shares how a more family-centered and coordinated system of health care can ease the family experience.
Core to the Maternal and Child Health Bureau’s definition of children with special health care needs (CSHCN) is the need for care “beyond that required by children generally.” While it is understood that this means more doctor’s appointments, therapies, services, hospitalizations, and potentially a need for additional in-home care for the child, the impact on parents, caregivers, and families often is overlooked. Parents strive to do everything they can to ensure the best care for their child. In addition to day-to-day care, they are faced with navigating a fragmented system, coordinating across multiple providers who do not communicate with one another, and figuring out confusing health insurance policies and payments among other tasks on a long to-do list. Many of the challenges families face are due to shortfalls in our complex health care system. Read more.
Additional Resources
In California, 14% of children have a special health care need. Kidsdata released updated data on children with special health care needs that describe their characteristics, access to services, level of insurance coverage, and quality of their care. The data also describe the impact of having a special health care need on children and families.
National Care Coordination Standards for Children and Youth with Special Health Care Needs
These Standards help state officials and other stakeholders develop and strengthen high-quality care coordination for children. It includes identifying and assessing needs, engaging families, and building a strong and supportive care coordination workforce.
An Almost Complete List of Services Used by Families and Children with Special Health Care Needs
Children with chronic and complex health conditions and their families require access to a wide array of health care and other services to function optimally. This list can be used for care mapping, care planning, resource database creation, and referral system development.
The Lucile Packard Foundation for Children’s Health continually updates a curated list of COVID-19 Resources for Children with Special Health Care Needs.
Recently Released Data about Children with Special Health Care Needs and Childhood Adversity.