History of this Website

In September 2009, sixty parents of children who are deaf-blind and professionals came together to share ideas related to training, supporting and encouraging family leaders. We all agreed that families are the ones who can make major changes happen at the local, state and national level.

 Those in attendance recognized that many organizations were doing similar family leadership activities, but they were not connected and working together as efficiently or effectively as they could be. The vision of this group was to build a network of people to share information and activities related to family leadership development for families of individuals with deaf-blindness or other severe challenges. This website is one of the primary components of this collaborative network.

 The purpose of FamiliesLead.org is to bring a network of people and organizations together to share ideas, resources and support for leadership training for parents and other family members of individuals with disabilities.

Research and Support for Family Leadership Training


There is a whole body of literature which supports family leadership training and how it empowers families to implement changes at the local, state or national level. The materials contained in the Planning Tools section help to answer the question “Why is family leadership important?” and “How does the research support the need for parent leadership training"? 

Family Leadership Learning Materials and Tools


Many of the state Parent Centers, state deaf-blind projects and other parent organizations provide training for families on advocacy and leadership skills. This website incorporates materials from many of these organizations. The goal is to share, with families and organizations, some of the best materials available to develop family leadership skills. Each of these materials is being shared with permission to adapt according to your needs. Every attempt has been made to acknowledge the original source and we ask that you do the same by adding a notation at the bottom that reads: Adapted from: (Title of document), (Author or Project Name), (Date). If anything is incorrectly identified please contact Robbin Bull.

Our Network Partners


National Center on Deaf-Blindness (NCDB)

The National Center on Deaf-Blindness provides technical assistance and information services to agencies serving children and young adults who are deaf-blind, as well as their families. For several years, NCDB offered an intensive family leadership training program in many states. This was a face-to-face training which brought families across a state together to learn and develop leadership activities. Many of the materials on this website are from those trainings.

National Family Association for Deaf-Blind (NFADB)

The National Family Association for Deaf-Blind (NFADB) is a nonprofit, volunteer-based family association.  They are the largest national network of families focusing on issues surrounding deaf blindness.  NFADB has been instrumental in assisting NCDB and the state deaf-blind projects in developing family leadership materials to be used in training and supporting families across the country.

Parents as Collaborative Leaders (PCL)

Parents as Collaborative Leaders: Improving Outcomes for Children with Disabilities was a national partnership between the University of Vermont, PACER Center, and several other parent and advocacy organizations. The project developed research-based training materials and internship experiences to support parents of children with disabilities in becoming active leaders in policy development and evaluation.

Pennsylvania Training and Technical Assistance Network (PATTAN)

Through PaTTAN, the Pennsylvania Deaf-Blind Project has offered family leadership training, and support to assist families to become advocates for all children with sensory impairments.  Many of their training documents are included on this website.

Texas School for the Blind and Visually Impaired (TSBVI)

Texas Deafblind Project believes that parents and other family members are at the "heart" of creating enriched learning opportunities for children with visual impairments including those children with deafblindness or multiple disabilities. The project has been a leader in the development of family leadership training programs for several years.

New York Deaf-Blind Collaborative (NYDBC)

The New York Deaf-Blind Collaborative, in collaboration with the New York Parent Network and Parent Training Information Centers for New York State, has been a leader in developing family leadership training for families across New York state in both English and Spanish. They have generously shared their training documents with other projects wanting to develop a family leadership training program.