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Families of children and youth with special health care needs have unique perspectives about the complexities of systems of care because they are involved with so many aspects of these systems. Though there is much agreement on the value of family involvement at the systems level of health care – where policies, programs and services are created or changed – it is still rare for families to have more than a token amount of power and influence. This issue brief provides an assessment tool, featuring four domains and specific criteria, that organizations can use to measure the level of family engagement in their work.

Download the Family Engagement in Systems Assessment Tools 

Related Webinar: Panelists explore this framework, share models of success and discuss common barriers to incorporating meaningful family engagement in systems-level initiatives.

Related Grants

To produce a report that will identify key criteria affecting systems-level family engagement and provide a framework and plan for developing a measure of family...