Over the past four years, HRSA has awarded more than $2 million in grants to support Family-to-Family (F2F) Health Information Centers for children and youth with special health care needs (CYSHCN). The centers are unusual because they employ parents of CYSHCN who've "been there" to help other parents like them navigate a complex and often-confusing health care and social service system.

"Parents of a child who is developing in a typical manner can call on a mom or friend for advice," explains Julie Arel, Acting Executive Director of Parent to Parent (P2P) of Vermont, a Family-to-Family grantee. "But if a child has cleft lip or palate, or cerebral palsy, help may not be as easy to find. In those cases, parents need help from someone who has been there and done that. Parents connected through P2P are better informed. They feel less isolated and more hopeful, and are better prepared to take on leadership roles in the CYSHCN community."

P2P uses Access database software to help "make a match" between parents of CYSHCN at four sites throughout Vermont. Matches are based on a child's age, diagnosis, county of residence and "special experience," a category indicating whether a child has been home schooled or hospitalized out of state, or had a certain type of procedure.

Arel says "our database has revolutionized how we provide information and assistance to families, rapidly and consistently, even with changes in staff." User-friendly pages track family and professional contacts, insurance status and financial support, and include to-do lists for staff. The database also contains a "diagnosis" button that links staff to a lay definition of more than 400 disorders and provides important information to local, state and national partners.