What is a Family Leader?

Black and white photo of a large group of adults standing behind children in wheelchairs,Parents of children with disabilities play a critical role in developing educational policies and practices that help their child succeed. For decades, parent advocates have influenced national, state and local educational policies.

 The results? Special classes in public schools; laws that mandate free and appropriate education for children with disabilities; and the establishment of advocacy organizations, just to name a few.

 Parents, grandparents and other family members of children with disabilities can become a family leader by gaining the knowledge and skills needed to build positive partnerships with professionals and other families. Working with these constituents, parents have the ability to shape the direction of services for their child and other children with disabilities at the local, state and national levels.

 A family leader is also a professional or an organization that empowers parents and educators to raise achievement for children with disabilities.

Why is Family Leadership Important?

Parent involvement in a child’s education is key to success. When parents actively engage in their child’s education at home, their children do better in school. Parents who become advocates and decision-makers at schools and in their community have the power to influence educational policies and practices that shape the future of their child’s education.

 Family leaders have the power to affect change in their communities. Because of parental action and community involvement, family leaders have been able to:

CheckMark.png Upgrade school facilities

CheckMark.png Improve school leadership and staffing

CheckMark.png Obtain higher quality learning programs for students

CheckMark.png Incorporate new resources and programs to improve teaching and curriculum

CheckMark.png Increase funding for after-school programs and family supports

Parents who take a leadership role and achieve success will develop confidence in their ability to influence their child’s future. Parent leaders have opportunities to gain the skills they need to affect change by engaging in leadership activities with other parents and professionals.

 In addition to the direct benefit to their child, a parent’s involvement also benefits teachers. When a parent is actively involved in their child’s education, teachers gain a higher morale, which in turn, encourages the parent to volunteer and engage in other activities.

 Organizations that support programs and services for children with disabilities can also benefit from family leaders. Parents provide a unique perspective and bring a sense of reality to ideas and tasks. Parents can also help advocate to improve the quality of services and ensure that programs and policies meet the needs of families.

 When a parent participates in leadership and advocacy activities, they too benefit. By becoming a family leader, parents can:

CheckMark.png Gain management and executive skills they can transfer to their professional and personal lives

CheckMark.png Build social networks and connect with people in order to create opportunities for their children and themselves

CheckMark.png Develop closer ties to their community and neighbors

CheckMark.png Learn how to influence decisions made in the schools and communities

From parents and children, to organizations and professionals, everyone benefits when parents are fully engaged in their child’s education.

What Does a Family Leader Need?

Encouragement, support and training are three key components to becoming an effective family leader. When parents receive leadership training, they are able to fully engage in their child’s education and affect change in their schools and districts, as well as at state-level agencies.

In order to become an effective family leader, parents need to collaborate with professionals and other parents. An important first step is parent education and support programs. Parents of all backgrounds will need information about how the school system works and their rights and responsibilities as parents of children with disabilities.

Family leadership trainings will provide parents with effective approaches to school improvement and new approaches to teaching and learning. Parents and teachers who engage in collaborative leadership opportunities will obtain the tools they need to work as partners and become more successful as both caretakers and practitioners.  

A well-designed parent leadership program will prepare parents to become effective family leaders. Fundamental skills they will learn include:

CheckMark.png Human relation strategies

CheckMark.png Effective team functioning

CheckMark.png Communication skills

CheckMark.png Research and practice on the family’s influence on student learning

CheckMark.png Use of a variety of data

CheckMark.png Goal-setting, planning and program evaluation

CheckMark.png Developing organizational constitution, by-laws and procedures

CheckMark.png Defining roles for parents and parent leaders

CheckMark.png Understanding and working with people from different cultures and backgrounds

Parents’ needs are not static and change over time as their child ages. Coaching, mentoring and follow-up support for parent leaders are not only key to a well-organized parent leadership program, but help parents achieve success and ensure their participation as leaders in the future.

What Support is Available for Family Leaders?

In addition to the training tools and learning materials available on this site, there are many other resources that provide community support and help parents and teachers become effective family leaders.

National Center on Deaf-Blindness (NCDB)

NCDB is a national technical assistance center funded by the federal Department of Education. It works to improve the quality of life for children who are deaf-blind and their families.

State Deaf-Blind Projects

Across the country, individuals with various state deaf-blind projects collaborate to provide accessible education tools for children who have vision and/or hearing impairments.

Center for Parent Information and Resources (CPIR)

(CPIR) serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities.

State Parent Training and Information Centers

Every State has at least one Parent Training and Information Center (PTI) to offer families information about the disability of their child, about early intervention (for babies and toddlers), school services (for school-aged children), therapy, local policies, transportation, and much more.


On FamilyConnect you'll find videos, personal stories, events, news, and an online community that can offer tips and support from other parents of children who are blind or visually impaired.

The Arc

For over 60 years, individuals with this organization have worked to promote and protect the human rights of people with intellectual and developmental disabilities. The Arc actively supports full inclusion and participation in the community for children with disabilities throughout their entire lives.