This is a partnership beyond providing care. Family and personal expertise is a body of knowledge that constitutes a discipline. Family and self-advocate faculty, staff, and consultants provide interdisciplinary teams with an invaluable perspective: that of the recipient of care and services. The family and self-advocate as leader and teacher is invaluable to training programs, hospitals, and other public health programs.
From a health and wellness perspective, the key to effective family-professional partnerships entails:
- Shared decision making, always involving individuals and the family in planning and implementing activities.
- Addressing family priorities.
- Connecting the family to needed services.
- Tailoring recommendations to social, educational, and cultural issues affecting the family.
- Recognizing the impact of a child with special health care needs on families at a systems level.
- Acknowledging the potential of the family as a source of strength and support in child, adolescent, youth, and young adult care.
Historically in the field of MCH, the concept of family-centered care was developed within the community of parents, advocates, and health professionals concerned for CYSHCN, with the goal that all care is received in family-centered, comprehensive, coordinated systems. Further, individuals who have personal experiences with the system of care, such as those with developmental and physical disabilities; behavioral and mental health issues; and/or chronic illness provide insight and a perspective critical to the successful development of effective policies and practices.
