Funded by MCHB, the Family to Family Network of Virginia at the Partnership for People with Disabilities at Virginia Commonwealth University provides: 1) one-to-one support to parents of CSHCN and providers using trained volunteer Family Navigators; 2) training to parents on a variety of health related topics; 3) cultural liaisons who outreach to the Latino and African American communities; 4) a network of seven regional I & R hubs (each staffed by a parent of a CSHCN). Additional support: Administration on Developmental Disabilities, Virginia’s Departments of Health and Education. Collaboration with Medical Home Plus, Parent to Parent of Virginia, Federation for Families.
Activities/Methodology: Create broad awareness and easy access to VA F2FHIC for families and others; assist a minimum of 300 families of CYSHCN (at least 60 who are culturally/linguistically diverse) in making informed decisions about health care in order to promote good treatment decisions, cost effectiveness, and improved health outcomes; provide information regarding the health care needs of CYSHCN and the resources available to them; host training for staff development; identify successful health delivery models; develop, with culturally diverse families and representatives of health care providers, managed care organizations, health care purchasers, and appropriate state agencies, a model for collaboration between families of CYSHCN and health professionals; provide training and guidance regarding the support of CYSHCN; and facilitate input from parent stakeholders into policy activities.
Resource Guide for Families of Children with Hearing Loss
Our Resource Guide for Families of Children with Hearing Loss is the first in a series of booklets, designed to provide information in an unbiased manner so that families can make the choice of services, intervention, therapies, and/or communication modalities that is right for them. This particular resource guide, which is easy to read and filled with graphics, is focused on infants and toddlers diagnosed as deaf or hard of hearing through newborn hearing screening and features an overview of hearing and communication, information on assistive technology, hearing aids, and cochlear implants, and sections on early intervention, special education, and state resources.
From September 2013 through March 2014, 165 families were referred to the VA F2F HIC who had children diagnosed as deaf/hard of hearing through Virginia’s Early Hearing Detection and Intervention Program. In addition to enhanced 1:1 emotional support, the resource guide was reviewed with each family through home visits. Of the supported families who responded to a follow-up survey, 95% reported that the information provided was useful in making decisions about communication modalities. In addition to satisfaction and impact, we learned from these families about their timely referral to early intervention services (91% within 3 month of diagnosis).
The Resource Guide is available on our website and a Spanish version will be uploaded this summer. A second resource guide for families of young children diagnosed with Autism Spectrum Disorder will be published in the fall of 2014; a third resource guide for families of children with genetic disorders, is planned for release in winter 2015. FEEDBACK: “What a great resource - we are now connected to services.” “Irene (from the F2F) came to visit us - we live over an hour away. She has been absolutely great and this resource guide has advised us about all hearing loss related things we wanted to know.”
Resources are shared by the F2FHICs to help families, other family leaders and partners. While you are welcome to adapt any of the materials for your organization, we ask that you include an acknowledgement of the author/source in your adaptations and that you let the original author know of your use of the materials. Copyrighted materials may not be reproduced or adapted without the express permission of the author.
An interactive website developed with youth for middle schoolers with low incidence disabilities, their parents and teachers, to begin planning for life after high school
A brochure highlighting the Family to Family Network purpose and contact information
A handbook developed for parents and educators to understand and establish collaborative IEP teams and develop collaborative IEPs
Click on the Disability Awareness link to access materials developed with youth for use by Virginia schools and colleges to celebrate Disability History & Awareness Month (October)
A brochure developed for pediatrician offices on early intervention services (in Spanish)
A brochure developed for pediatrician offices on early intervention services
A 106 page policies and procedures manual for parents volunteering as Family Navigators for the Family to Family Network of Virginia
A 56 page interactive step by step guide of information, tools and resources for a child/youth to develop his own IEP
A workbook for parents to develop a person-centered description of their child for use in health and education planning meetings. It can be used as a powerpoint in IEP meetings or can be completed at home on the computer, on paper, with pictures, etc.
A powerpoint presentation on the seven habits of highly collaborative and effective teams
A brochure developed for pediatrician offices on special education (in Spanish)
A brochure developed for pediatrician offices on special education.