Supports for Families of CYSHCN: A Quick Reference Guide to Family-Led Organizations
Family Engagement / Family Leadership / Leadership in Family and Professional Partnerships
With a few exceptions, the four national, family-led organizations described in this document have affiliates in each state. In many states, one or more of these organizations are co-located at the same agency. In other states, the organizations are located in different agencies. Each project has a specific area of expertise: health care, emotional support, mental health supports, and special education. The family members who staff these organizations are parents/guardians of children and youth with disabilities/special health care needs (CYSHCN); some are siblings to CYSHCN. They understand families’ concerns about their children and can connect them with the organization that can best advise them. Staff at these organizations come from diverse backgrounds and are able to connect with families of like backgrounds in their own native languages. In other instances, staff can connect families from diverse backgrounds to cultural brokers.