What Family Voices Does
Family Voices is a national grassroots clearing house for
information and education about ways to assure and improve health
care for children with disabilities and chronic conditions. Our
vast network includes more than 40,000 families and friends, a
volunteer Coordinator in each state, ten Regional Coordinators, and
staff located in New Mexico, Iowa, Illinois, and Massachusetts.
This network enables Family Voices to share the expertise and
experiences of families with other families and with our
professional partners across the country. Our families,
Coordinators and staff serve as members of local, state, and
national boards and task forces; as staff for state health
agencies or parent organizations; as advisors to private and
public health systems and research projects... always bringing the
family perspective to policy discussions and decisions. As
families and friends, we speak with love and knowledge on behalf
or our children with special health care needs. At least 12.6 million children in the United States have special
health care needs. Some of our children with special health care
needs require only an accurate diagnosis and routine treatment and
monitoring. Other children will need life-sustaining technology,
treatment, and medicines throughout their lives. Children with
special health needs tend to receive their health care from a
combination of private and public financing and delivery systems.
Almost all children with special health care needs, no matter the
severity of their condition, live at home with their parents and
brothers and sisters. Our children with special health needs are, above all, children
who deserve a healthy, happy childhood and a chance to grow up to
be productive adults. Like all children, they live with their
families in towns, cities, and rural areas of the United States,
going to school, attending worship services, enjoying community
events. However, unlike most children, they also have challenging
health conditions that usually make their lives and their
families' lives more complicated. Some of our children have
physical, mental, or emotional disabilities; others live with a
chronic illness; many have a brief but life-threatening medical
problem. Unfortunately, any child, at any time, could develop a
disability or chronic health condition. We all come from families. Families are big, small, extended,
nuclear, multi-generational, with one parent, two parents, and
grandparents. We live under one roof or many. A family can be
as temporary as a few weeks, as permanent as forever. We become
part of a family by birth, adoption, marriage, or from a desire
for mutual support. As family members, we nurture, protect, and
influence one another. Families are dynamic and are cultures unto
themselves, with different values and unique ways of realizing
dreams. Together, our families become the source of our rich
cultural heritage and spiritual diversity. Each family has
strengths and qualities that flow from individual members and from
the family as a unit. Our families create neighborhoods,
communities, states, and nations.