Family to Family Health Information and Education Center

2013

In Virginia, more than 270,000 children are reported as having special health care needs. This number represents about 15% of the state's total child population and is slightly higher than the national average, as is the percentage of these children living in poverty (National Survey of Children with Special Health Care Needs, 2002). Families whose children have special health care needs face challenges that require coordinated, cohesive support from other families and from professionals who possess both knowledge and insight. Families struggle to meet the needs of their children by piecing together fragmented services. Documentation of their struggle appears in the 1999 Needs Assessment and Recommendation Report of the Virginia Department of Health?s Division of Children with Special Health Care Needs. This report states that ?despite the best efforts of advocacy organizations and other organizations, it is clear that families in Virginia experience difficulty accessing and receiving support.? This difficulty manifests itself in a service delivery system with multiple entry points, complex formats, and unclear guidance on eligibility requirements and types of services offered through the multiple agencies. As advocated by Park, Turnbull, and Turnbull (2002), families need an ?integrated and coordinated service system that goes beyond traditionally defined roles? and encourages educators and service providers to assume a holistic perspective.? With funding from the Maternal Child Health Bureau, the Partnership for People with Disabilities, in collaboration with Medical Home Plus (MHP)and Parent to Parent of Virginia (PTPofVA) established Virginia's Family to Family Health Information and Education Center (called VA F2F). The VA F2F Center builds on the work begun by the VA INFO Center at MHP. The VA F2F Center focuses on: -Individual Advocacy (MHP): Through a website and toll free number, parents of Children and Youth with Special Health Care Needs (CYSHCN) have access to information and resources to help them in making decisions about their children's health care needs, and in accessing community supports. -Peer Advocacy (PTPofVA): Parents of CYSHCN receive one to one emotional support through a network of experienced and trained parents. -Systems Advocacy (the Partnership, FV of VA, and PTPofVA): A cadre of parents of CYSHCN have been, and will continue to be trained as parent leaders advocating to improve the health care system in Virginia.

Family Support, Children with Special Health Care Needs

Developing & Disseminating Information, Continuing Education/Community Training, Other Direct/Model Services

Health-Related Activities, Other

Professionals and Para-Professionals, Family Members/Caregivers, Children/Adolescents with Disabilities/SHCN, Legislators/Policy Makers

Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English, Geographic Areas, Rural/Remote, Urban

State

N/A