FAMILIES of Children and Youth with Special Health Care Needs face many challenges to being meaningfully and systematically involved in decision-making for their child’s services and for how the service system is organized.

Sooner SUCCESS involves families at the state, regional and local level. Family members were part of the original project planning, sit on the State Interagency Coordinating Council, hold staff positions and are supported as Core Family Members on each of our County Coalitions.

FAMILIES contribute to teams and programs in multiple ways:

• Families can be visionaries, missionaries and pioneers
• Families are driven by experiences and a passion
• Families provide a shared desire to make the program successful
• Families serve as a reality check for the program
• Families can validate the differential between perceived and real needs
• Families identify and connect with diverse communities (rural, urban, socio-economic status, culture, age)
• Diversity brings new perspectives to the table
• Families can advocate in ways that professionals cannot
• Families can help sensitize professionals

• Provide the family perspective
• Represent the population served
• Understand the professional’s perspective
• Advocate and share information on the needs of families
• Translate personal experience and stories into general system recommendations
• Identify common values, expectations and goals
• Foster success with flexibility, compromise and creativity
• Question the status quo
• Develop or edit material for other families
• Network with other parents, youth, young adults and professionals
• Expect accountability and responsibility and be accountable and responsible

* Sections were adapted from:

Consortium for the Employment of Parent Representatives. (2002) Making It Work: When Families that Represent a Service Population Become Employees. Crawfordville, Fl: Family Institute for Family Involvement and the Gainsville, Florida: Institute for Child Health Policy