EDUCATING INFORMED CONSUMERS: A NATIONAL SURVEY OF FAMILIESKNOWLEDGE CONCERNING RESPITE SERVICES

THIS PROJECT IS BASED ON THE PREMISE THAT PRIMARY CARE- GIVERS SHOULD PLAY A MAJOR ROLE IN DESIGNING, MANAGING, AND MONITORING SERVICES WHICH SUPPORT CHILDREN WITH DISABILITIESAND THEIR FAMILIES. RESPITE SERVICES OFFERS BUT ONE FORUM FROM WHICH THEY CAN EXERCISE THESE ROLES. THROUGH THE USE OF AN ADVISORY BOARD, MADE UP LARGELY OF PRIMARY CARE GIVERSAND A NATIONAL SURVEY THIS PROJECT SEEKS TO DETERMINE THE SCOPE OF KNOWLEDGE WHICH CARE-GIVERS HAVE ABOUT RESPITE SER-VICES. A MAJOR FOCUS WILL ALSO BE ON ASCERTAINING WHAT CAREGIVERS NEED TO KNOW TO BECOME MORE EFFECTIVE CONSUMERS OF THESE SERVICES. THESE ACTIVITIES WILL BE SUPPLEMENTED BY A COMPREHENSIVE REVIEW WHICH WILL STRIVE TO IDENTIFY THE RES- OURCES IN THE PROFESSIONAL LITERATURE THAT CAN PROVIDE A BASIS FOR DEVELOPING MATERIALS FOR NON-PROFESSIONALS. CARE-GIVERS WILL ALSO BE ASKED TO IDENTIFY THE FORM WHICH GUIDE MATERIALS SHOULD TAKE IN ORDER TO BE MOST ACCESSIBLE AND USEFUL TO THEM.