From November 1996 to June 2000, Family Voices, a national organization of parents of children with chronic medical conditions and disabilities, expanded its activities and increase its information-dissemination capabilities nationally.

Under the project, called "Building Family Voices in the States," eight states were selected through a competitive grant process to:

• Provide information to families about health services and systems.
• Work with state and local partners to improve care for children with special needs in their states. (The states were Louisiana, Maine, New Hampshire, New Jersey, North Carolina, Rhode Island, Tennessee, and Utah.) Each site received $7,500 in each of two years of the project to support their education and policymaking work.

Key Results

• Family Voices expanded its network to include a greater number of fathers, families of color, and families from urban, rural and underserved communities.
• More Hispanic, Native American, and African-American volunteer family leaders became State Coordinators.
• The organization's Web site was expanded, resulting in more than 1,750 hits per month.
• Project personnel published articles in local and national periodicals, including the journal Pediatrics.
• Toward the end of the grant period, Family Voices received funding from the Maternal and Child Health Bureau (MCHB) of the U.S. Department of Health and Human Services (DHHS) to help plan a national network of Family-to-Family Health Information Centers.
• Legislation providing funding for such a network was introduced in Congress in 2000 as part of the Family Opportunity Act/FOA, but did not pass in 2000 or 2001. However, MCHB included modest funding for piloting such centers in its budget.

Family Voices has received additional funding from the David and Lucile Packard Foundation to explore strategies to achieve long-term financial stability for the organization and its chapters.

Funding
The Robert Wood Johnson Foundation (RWJF) provided a $489,306 grant to support the expansion.