2010 Express: For Children with Special Health Care Needs and Their Families

Community Integrated Systems

Goal: Community-based service systems will be organized so families can use them easily.

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.

Need

Children and youth with special health care needs and their families typically require more medical and non-medical services than other children. Because they must interact frequently with multiple aspects of the community service system, this population of children and families are most likely to experience fragmentation. Despite more than a decade of Federal, State, and community efforts to create well-coordinated and integrated systems of care, families of children and youth with special health care needs continue to face challenges in obtaining and coordinating the health and related services and resources they need. Differing eligibility criteria, duplication and gaps in services, inflexible funding streams, and poor coordination among service sectors are just some of the barriers consistently reported by parents, health care professionals, and administrators. Families often express concern that they are too often left to coordinate and obtain services on their own. Although past efforts to reorganize and restructure service delivery have succeeded only marginally, many communities are finding new solutions to these issues.

Activities

The Community Integrated Service Systems Program recognizes the key role that communities play in providing services and supports to children and youth with special health care needs and their families. The program supports grants to States and others to work in partnership with communities to coordinate and integrate systems and services through:

coordinated eligibility criteria;
coordinated financing of services;
shared data and information systems; and
coordination of services with the medical home.

Acknowledging the need to actively partner and collaborate with other programs that serve children with special health care needs, the program also works with the Federal Interagency Coordinating Council (FICC) to minimize duplication of programs/activities related to early intervention services for young children with disabilities and their families. A third focus of the program is Communities Can!, a national program to recognize and celebrate communities throughout the Nation that have demonstrated effective ways to blend resources from multiple sources to serve children and families more effectively. During the past 3 years, 15 communities have been honored through this program.

Find out if your community has an existing Community Collaborative Work Group. If not, start one with the agencies, programs, organizations, and practitioners who share your interest in community systems integration.
Engage local State legislators in public awareness campaigns. Have them go along with families to appointments so they can see the issues firsthand and can promote public awareness through their contacts with constituents and other legislators.
Contact your State Interagency Coordinating Council (SICC). Every State has one with responsibility to promote a coordinated system of services for young children with special health care needs and their families. Many communities also have Local Interagency Coordinating Councils to serve this purpose.

Resources

Communities Can!: http://gucdc.georgetown.edu/commcan.html
Federal Interagency Coordinating Council: www.fed-icc.org

Cuyahoga County, OH, launched the Early Childhood Initiative 3 years ago and housed it at United Way. The Initiative provides leadership, supports the collaborative process, and offers all families in Cuyahoga County a continuum of services, regardless of where they live or how much they earn. The diversity of families served is a key factor in planning and implementing the Initiative on all levels, from programs to broad-based community outreach. Services are provided neighborhood-by-neighborhood by staff reflective of the community culture. The Initiative focuses on supporting healthy, well-informed families, and providing medical homes for all children and sufficient quality childcare. The result is that a family can enter the system through any door and find all of the services they need, including self-sufficiency supports for parents.

Wolf Creek, OR, a small, rural community, is considered to be one of the poorest communities in the Pacific Northwest and noted for attracting individuals with “alternative, counterculture” lifestyles. Using Enterprise Community development funds as leverage, the community has been highly successful in attracting funds from other public and private sources. Health and human services are available through the school or the closely connected Oregon Parent Center, including physician services, Healthy Start, WIC, immunizations, and mental health and parent support groups. The school also provides adult education courses. Family involvement is supported by regular school bus transportation for parents. Through community-driven activities, Wolf Creek has increased trust, built community involvement, and integrated services to meet the needs of children and families.

Livingston County, MI. Families, providers, agencies, and other community representatives have changed the culture of service delivery. By developing a structure that brings together all segments of the service community, as well as business and community service organizations, this community has been able to create a communal sense of responsibility for serving and supporting all children and families. Agencies learned to give up turf. There has been a change in language and focus. One never hears “That’s an FIA client.” Instead, one hears, “How can we all work together and blend funds and services to make things work for each family?”

Kauai Good Beginnings (KGB) is the local entity of Hawaii’s Good Beginning Alliance (GBA), which was mandated by the 1997 State legislature to form a partnership among government, education, social service providers, and families to develop a master plan for the State and an integrated system of early childhood programs and services. After more than 70 people came together to create a master plan, the KGB network engaged 24 programs and agencies to help serve children. With the backing of the Office of the Governor to create collaboratives and the experience of working with one another on the master plan, Kauai community members returned to their jobs and neighborhoods with a familiarity about each other’s needs and expertise, and a respect for jointly tackling projects. People pick up the phone regularly and interact across disciplines to solve immediate problems and create new collaboratives to determine how to pool expertise on more thorny issues.