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Family Involvement
"Our program would not be where it is today without the AMCHP family scholarship program." Robert Cook, Illinois CSHCN
"I learned so much from the family scholar experience! I now can be more effective in working with my state program." Suman Marks, South Carolina
Families contribute invaluable insight and experience to AMCHP programs and policies concerning maternal and child health and children and youth with special health care needs. Within AMCHP, families advise on development of publications and programs and also serve on AMCHP committees and the Board of Directors.
In addtion, we have seen a growing recognition by State Title V Programs to involve families as partners in policy development, and in the planning and delivery of services for special populations. National Performance Measure 14 of the Maternal and Child Health Block Grant Application states “The degree to which the State assures family participation in program and policy activities in the State Children with Special Health Care Needs (CSHCN) program”. A checklist of six characteristics is provided to identify key areas of family participation. By scoring each of the characteristics from 0 to 3, the State is able to derive a score that documents the degree to which family participation is occurring in program and planning activities in the State CSHCN Program.1
Initially, families had to fight to secure a place at the decision-making table, and typically served in a volunteer advisory capacity by State Title V Programs . Later, some families were paid a "stipend" to cover childcare costs, travel related expenses, and income lost because of missing work. As families became more experienced and skilled, and as organizations saw, first hand, the value of ongoing family participation, some agencies hired family members or secured their services through contracts. However, while many programs and agencies believe that everyone around the table should be compensated or paid in an equitable manner, many family leaders who work as experts and system change agents on behalf of child health organizations, do not yet have a formal paid position with those organizations. 2
While there has been a significant increase in the level and types of family involvement and employment, there is still a need to share strategies and mechanisms used by state agencies and non-profit organization to recruit, hire, monitor and evaluate family employees and consultants.3 Resources such as the “Making it Work: When Families that Represent a Service Population Become Employees” and the Family Voices' Title V Toolbox encourage the active participation of families within Title V programs and provide a collection of materials that support family involvement in maternal and child health and children with special health care needs programs. 2
Project Areas
- Family and Youth Leadership Committee
- Family Scholarship Program — The Family Scholarship Program at the AMCHP annual conference gives families an important voice in MCH policy and program development. Public health professionals at the conference also enjoy the opportunity to interact with the families they serve. Through participation in skills-building and networking sessions, family representatives learn strategies to increase family involvement in their state and to improve services for all children and families. For MCH programs, the family scholarship program represents an opportunity to identify, encourage and train promising family leaders.
- Family Involvement in Title V Program - A Guide for Senior Managers
- Family Involvement at the AMCHP Annual Conference
Key Partners
1. Methodology Guidelines for Scoring NPM#14 (Family Participation) of the Maternal and Child Health Block Grant. Title V Toolbox.
2. Making it Work A manual for recruiting, hiring and retaining family representatives.
Last Updated
November 14, 2007
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