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Whether it’s facing the shock of a first diagnosis or responding to the many challenges along the way, parents of children with special health care needs (CSHCN) often find that their most highly valued source of support is an experienced and knowledgeable parent who has navigated the same path. 

But how to find a fellow parent with reliable answers to questions about health insurance coverage or service eligibility requirements? Where to go for emotional support? When every door seems closed, Family-to-Family Health Information Centers (F2F) may provide the answers.

 “Getting help from our state F2F literally changed our life,” said one parent from Ohio. “Seems drastic doesn’t it? But when you have exhausted every effort you are aware of, and still haven’t gotten to the resolution, drastic is what you need. It was amazing what comfort can come from someone simply saying this isn’t only your problem anymore.” 

Family-to-Family Health Information Centers (F2Fs) are federally funded organizations located in every state. They are staffed by experienced family members who provide information, training, resources, and peer support to parents and caregivers of CSHCN and the professionals who serve them. 

F2Fs offer an array of supports for families without charge. Fellow parents provide one-to-one assistance for families seeking specific information, resources, or referrals related to their child’s health care or condition. Other services might include support groups and training programs that address topics such as health care financing, insurance, conservatorship, transition, advocacy, leadership, and more. F2Fs train families to partner in their own child’s health care as well as to serve as partners with professionals on committees and other system initiatives.

Many F2Fs include a parent mentor training program designed to match parents or caregivers seeking informational or emotional support to a trained mentor who has experienced the same stress and frustration of navigating our complex health care system. Other parents can empathize with the spectrum of challenges experienced by parents of CSHCN that a health care professional may not understand. 

But parents aren’t the only ones who can benefit from the expertise of F2F staff members. Health care professionals and other providers serving CSHCN also consult with F2Fs for information and resources. A provider is only one piece of a child’s health care puzzle and may work with an F2F to better understand the family experience of navigating the larger system. Providers also may look to F2Fs when linking families to community services and supports. As a result of partnerships with other community-based programs, many F2Fs are able to offer outreach and education programs to underserved families who might not otherwise have an opportunity to access their services. 

Individual services offered by F2Fs may vary from state to state, but each one shares the goal of “parent-professional partnerships at all levels of decision making.” Nora Wells, executive director of Family Voices, explains, “While many parents of CSHCN and their providers associate F2Fs as a resource for parents, a substantial component of F2F work focuses on effective parent-professional partnerships across systems of care. F2Fs in every state work with health care professionals, service providers, legislators, and other policymakers on health care system policy and program improvements.”

F2Fs ensure that family members and health care professionals have access to information about everything from individual services to public policies affecting their child’s care. F2Fs are funded by the Health Resources and Services Administration, and every state and the District of Colombia has an F2F. The National Center for Family / Professional Partnerships, a program of Family Voices, serves as the national coordinating body for F2Fs nationwide. Learn more about F2Fs and locate the F2F in your state here

Related Grants

Findings from a survey of California-based caregivers that asked them about their experiences receiving peer support for caring for children and youth with special health care needs.

This virtual cafe provided a brief overview of key topics, major frameworks, and emerging trends to advance the quality of life and well-being of children with medical complexity and their families. The café was the first of a six-part series led by the Center for Innovation in Social Work and Health at the Boston University School of Social Work.