Goal: All families of children with special health care needs will partner in decision-making at all levels and will be satisfied with the services they receive.
—2010 Express 10-Year
Action Plan to Achieve Community-Based Service Systems for Children and Youth
with Special Health Care Needs and Their Families.
This program of the Maternal and Child Health Bureau (MCHB) is administered by its Division of Services for Children with Special Health Needs (DSCSHN). For more information on this and other programs of the Maternal and Child Health Bureau contact MCHB Communications (301) 594-4185 or go to www.mchb.hrsa.gov.
Families of children and youth with special health care needs:
To build upon family strengths and abilities, MCHB partners with the families of children with special health care needs to support a number of activities. Through a cooperative agreement with Family Voices, a network of families and providers gives access to needed information on financing, supports, services, and outreach, and it provides consultation on how families can serve as partners in decision-making. MCHB also funds the Family-to-Family Health Care Information and Education Centers program, with the goal of having centers in all States and jurisdictions. In addition, MCHB currently funds the National Center for Cultural Competence at the Georgetown University Child Development Center, which provides consultation and technical assistance to family and provider partners related to the integration of culturally competent values, principles, structures, policies, and practices, including the provision of onsite organizational cultural competence self-assessments. Partners in these activities include professional organizations, families, providers, foundations, schools of higher learning, Title V and other Health Resources and Services Administration programs, and community-based agencies.
“The fathers’ program…is a place to share my burdens with others who, at some time or another, have had similar experiences. It is a safe haven from the subtle pressures on men to show that ‘everything is fine.’ ”
—Jeff Raefield, a 5-year fathers’ group participant,
“Circles of Care and Understanding,” Support Programs for Fathers of Children
with Special Needs, ACCH, 1992
“…collaboration between and among families and professionals is the spirit behind this movement [family-centered care]. Not only does working together make sense, it also is a respectful way to humanize the delivery of health and developmental services, and it improves the outcomes for children needing specialized care and support. A commitment to collaboration in hospital, community, and home-based health and developmental care settings represents the only means to achieve the vision of family-centered care.”
—Family-Centered Care for Children Needing
Specialized Health and Developmental Services, ACCH, 1994
“Listen to families and try to understand their experience: perhaps the most important advice that family members can give to professionals is to listen to families. Every family is unique, and if professionals want to help families, they must be willing to hear what they have to say. All professionals bring their family experience to their different disciplines and I think that it is incredibly important that they use that experience and that wisdom to understand some of the processes that are going on with the families with whom they work.
Whether our goal is to support one family or to reform a whole system, collaboration with families and other professionals can help to make it possible.”
—Partnerships at Work: Lessons Learned From Programs and Practices
of Families, Professionals and Communities,
Department of Social Work, University of Vermont, 1997
Quote from a participant after the third NCCC Training Workshop: “I must say, in all honesty, that my professional life has been changed…I found the continuum for cultural competence to be the most helpful tool presented. The application within our own tribal agency will reap benefits that will spread to the smaller communities as well as the counties and the State.”
—Jeff Muse, director, Special Programs,
Great Lakes Intertribal Council, Inc., Lac du Flambeau, WI
Children and youth with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.
Cultural competence is a dynamic, ongoing process—not a goal or an outcome. Often it is said that it is “a journey not a destination.” It is a continuing process of growth in knowledge, experience, and understanding.
—John Evans, retired former Title V CSHCN director,
Texas Department of Health