OCCYSHN operates on the principle that work done on behalf children and youth with special health care needs (CYSHCN) must reflect the expertise of their family members, because they know better than anyone how Oregon’s health care and service systems are working for them.
The Family Involvement Program promotes opportunities for family members of CYSHCN (and youth themselves) to participate in decision-making activities at all levels. The program connects people from all backgrounds and communities to providers and policy-makers. Family members of Oregon CYSHCN lend their voices to boards, advisory committees, task forces, and other important policy activities throughout the state.
OCCYSHN’s Family Involvement Program work also includes:
- Oregon Family to Family Health Information Center
- Birth Anomalies Surveillance System family support resources
- Training for health care providers
- Western States Regional Genetic Network Family Representative Program