Annotation: This report presents information about the ways families and family organizations are involved with Title V children with special health care needs (CSHCN) state programs. The report is based on information collected through telephone interviews with Title V CSHCN programs. The report includes a background section, an executive summary, findings, and a conclusion. Findings are categorized as follows: (1) family involvement in CSHCN and MCH programs, 1992 and 2002, (2) overall family involvement in CSHCN programs, (3) family involvement in advisory committees and task force groups, (4) family involvement in addressing state performance measures and special initiatives, (5) family involvement in the block grant process, (6) family members employed by CSHCN programs, (7) family involvement in in-service trainings, (8) support provided to family organizations and families, (9) support provided to families and family organizations, (10) strategies for the involvement of underserved populations, and (11) from the viewpoint of family leaders. The report includes five appendices: (1) Title V toolbox for family participation, (2) suggested strategies for family involvement, (3) state-by-state tables, (4) CSHCN questionnaire, and (5) family leader questionnaire. [Funded by the Maternal and Child Health Bureau]
Contact: Family Voices, P.O. Box 37188, Albuquerque, NM 87176, Telephone: (505) 872-4774 Secondary Telephone: (888) 835-5669 Fax: (505) 872-4780 Web Site: http://www.familyvoices.org Available from the website.
Keywords: Block grants, CSHN programs, Children with special health care needs, Community participation, Families, Family support, Initiatives, MCH programs, Parent participation, State programs, Title V programs, Training, Underserved communities