Family Voices is a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs. It monitors public and private sector health care changes that affect children and families through the collective efforts of families: a volunteer Coordinator in every state; 10 Regional Coordinators; and a small staff working in several locations around the country. Together, they share the expertise and experiences of families from around the country with state and national policymakers, the media, health professionals, and other families. There are almost 7,000 Family Voices members--families of children with special health needs and friends and professionals who know and love children.
Above all, Family Voices believes that:
All children deserve quality health care.
Families with children who have special needs and professionals who work with them have an expert understanding of what works and what doesn't work within current health care systems.
Health systems built upon a set of tested principles and practices that flow from this expertise can improve the health status of all children and families.
Therefore, health systems serving children with special health care needs must adhere to the following principles:
1. Families are the core of any health system. All families, including those who have children with special health needs, are the primarily caregivers and educators for their children. They should be respected and valued for their expertise and commitment to their children.
2. Universal access. In order for this nation and its children to be healthy, it must guarantee unconditional access to quality primary and specialty health care at a reasonable price--regardless of a family's health, income, employment, location, preexisting condition, or prior utilization of services.
3. Flexibility. Whether public or private, a health care system must provide effective, flexible services that are guided by medical and family needs, rather than by the policies of standard medical insurance practices or government bureaucracies.
4. Comprehensive, coordinated, community-based care. Quality health cart means a coordinated system of comprehensive services---prevention, education, screening, diagnosis, primary and specialty care, hospitalization, medication and supplies, equipment, and rehabilitation-all available as close to the family's home as possible.
5. Family-professional partnership. Outcomes improve when families and professionals make decisions jointly, respecting the expertise, talents, and resources that each brings to the care of the child with special health needs.
6. Cost effectiveness. By focusing on outcomes, allowing family choice, and strengthening and supporting the role of families in health care systems, costs can be reduced. The elimination of duplicative procedures, unnecessary paperwork and administrative overhead also reduces costs.
7. Quality assurance. Working as partners and remembering these principles, families and health professionals must regularly review and provide feedback on health care financing and delivery.
Virginia Volunteer Coordinators are Gayle Brown in Fairfax (703) 503-4529 and Kathy Maggio in Bristol (540) 466-0515.
To join Family Voices, send your name, address and telephone number to: Family Voices, Box 769 Algodones, NM 87001
Although Family Voices does not charge membership fees, they do accept donations. Volunteer State Coordinators mail members information without charge. If you would like to receive information directly from Family Voices national office, send $25 for postage to the address above.