The families who participated in this survey and focus groups were extremely generous in giving their time and sharing their insights. They clearly communicated that they did so in hoping that the system would listen and be responsive to the needs that they expressed. Someone to listen to our experiences and offer suggestions - mostly a sympathetic ear. Include consumers in all forums designed to implement systems change and improve service delivery. Hire and train more respite workers and facilitate access to these workers.
Agencies collaborate to create a resource booklet for families with children with special needs.
Have this information widely disseminated in physicians' offices, schools, libraries, etc. Agencies collaborate to establish an 800 number for information and support to families who have a child with special needs. Utilize technology more effectively. Have computers accessible through libraries, agencies, physicians' offices, and hospitals including ICUs. Have web sites with information for families, and chat rooms to connect with other families with children with similar special needs.