Title V Toolbox for Family Participation

Welcome to the Title V Toolbox for Family Participation! To encourage the active participation of families within Title V programs, Family Voices has collected materials developed by states that support family involvement in MCH (Maternal and Child Health) and CSHCN (Children with Special Health Care Needs) programs to be shared on this website. By building upon existing materials and models, families and states can strengthen family involvement in their own programs.

Please explore these resources freely and come back often to view newly added resources. We enthusiastically welcome feedback and questions, and new submissions.

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Supporting Family Participation

Mission Statements and Policies - The policies and procedures of individual state MCH and CSHCN programs
Family Advisory Committee Development Tools - Materials created by states to develop family advisory committees or councils including descriptions, guidelines, by-laws, and information forms
Family Employment Tools - Resources from states on employing parents in their state program as consultants or staff
Contract Information - Information on contracts or examples of contract language that states use to encourage family participation

Measuring State Performance

Needs Assessments and Focus Group Tools - Examples of tools used in states to assess family needs
Block Grant Review Materials - Examples of materials to help family members understand the Block Grant process
Performance Measure 14 - Examples of materials to help family members understand Performance Measure 14

Providing Family Friendly Information

Title V Information - Resources to educate families about
Title V
Examples of Resources for Families - Samples of family friendly information provided by state Title V programs to offer guidance to families

Sample Resources
Making it Work A manual for recruiting, hiring and retaining family representatives.

Family Handbook A handbook for families to become familiar with programs and services offered by the Illinois' Division of Specialized Care for Children (DSCC).

National Center for Cultural Competence Visit this Title V sponsored site for more information on making your CSHCN or MCH program more culturally integrated.

What is Title V?
Title V is federal legislation enacted under the Social Security Act administered by the Maternal Child & Health Bureau for the advancement of the health & safety of mothers, infants, children, adolescents, and children with special health needs.

Performance Measure 14 and State Negotiated Measures
Learn about Title V and the history of Performance Measure 14, a rubric for measuring the degree to which the State assures family participation in program and policy activities in the State CSHCN program, and State Negotiated Measures. Research the criteria for measurement and state scores. Visit the Maternal and Child Health Bureau's Title V Information System website at http://www.mchdata.net

Families in Program and Policy: A Survey of State MCH and CSHCN Programs
MCH and CSHCN directors in each state were surveyed by Family Voices' interviewers in order to learn about family participation in Title V programs. Findings and recommendations to strengthen family and state partnerships will be presented in a report planned for Spring 2003.
   Project Description,
   MCH Survey Tool (pdf),
   CSHCN Survey Tool (pdf),

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