National Organization Expands Resources for Families with Special Needs Children

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 website 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.