DEVELOPMENT OF MATERIALS ABOUT RESPITE CARE FOR FAMILIES WHOHAVE CHILDREN WITH DISABILITIES OR CHRONIC ILLINESSES

RESPITE CARE IS AN ESSENTIAL SERVICE FOR FAMILIES WHO ARE CARING FOR A CHILD WITH SPECIAL NEEDS. IN SPITE OF THE NEEDMANY RESPITE PROGRAMS ARE UNDER UTILIZED. REASONS FOR THIS INCLUDE: 1) A DISCREPANCY BETWEEN THE WAY SERVICES ARE ORG- ANIZED AND FAMILY NEED; AND 2) A LACK OF AWARENESS BY FAMI- LIES OF THE AVAILABILITY OF SERVICES AND HOW BEST TO USE THEM. ALSO, MANY FAMILIES MAY NOT BE COMFORTABLE LEAVING THEIR CHILD WITH THE RESPITE PROVI- DER OR KNOW HOW TO EDUCATE RESPITE PROVIDERS ABOUT THEIR FAMILY'S VALUES, PRIORITIES, AND ROUTINES. CSR PROPOSES TO DEVELOP GUIDE MATERIALS FOR FAMILIES THAT WILL DISCUSS HOW TO USE RESPITE SERVICES, HOW TO TRAIN RE- RESPITE PROVIDERS IN PARTICULAR FAMILY ISSUES, AND HOW TO LOCATE POSSIBLE SOURCES OF FUNDING FOR RESPITE CARE. THE MATERIALS WILL BE PILOT-TESTED WITH SELECTED FAMILIES AND RESPITE AGENCIES TO DETERMINE THEIR READABILITY AND USEFUL- NESS. THE MATERIALS WILL BE DEVELOPED BASED ON INFORMATION OB- TAINED FROM FAMILIES OF CHILDREN WITH VARIOUS DISABILITIES AND RESPITE PROVIDERS USING A FOCUS GROUP QUALITATIVE RE- SEARCH APPROACH. THE FOCUS GROUPS WILL BE CONVENED IN AT LEAST THREE GEOGRAPHIC LOCATIONS. FAMILY PARTICIPANTS WILL BE DRAWN FROM BOTH URBAN AND RURAL AREAS AND WILL REPRESENT DIVERSE ETHNIC, RACIAL, AND CULTURAL BACKGROUNDS. HEALTH WILL PROVIDE CONSULTATION ON FAMILY-CENTERED RESPITE CARE ISSUES AND WILL ENSURE EASY ACCESS TO LARGE NUMBERS OF PARENTS WHOSE FAMILIES INCLUDE CHILDREN WITH DISABILITIES ORCHRONIC ILLNESS. IC ILLNESS MATERIALS FOR FAMILIES WILL BE APPROPRIATE FOR USE BY RES-