Why build a family leader?

Families have always been powerful advocates for individuals with disabilities. When families gain the knowledge, skills, and confidence to lead, they can influence the systems, services, and policies that shape their loved one’s future.

Family leaders can:

• Build stronger partnerships with professionals and other families
• Influence decisions in schools and communities
• Improve programs, services, and supports
• Bring the family perspective to organizations and policymakers
• Create greater opportunities for their loved ones and others

But family leadership benefits more than the systems families seek to change. It strengthens families themselves—building confidence, connections, leadership skills, and a stronger voice within their communities. When families lead, change happens.

What Does a Family Leader Need?

Encouragement, support, and training are essential to becoming an effective family leader. Various organizations, including some state DeafBlind projects, offer family leadership training programs that teach participants skills such as:

• Human relations strategies
• Effective team functioning
• Communication skills
• Collaborating with professionals
• Use of a variety of data
• Goal setting, planning, and program evaluation
• Developing an organizational constitution, bylaws, and procedures
• Defining roles for parents and parent leaders
• Understanding and working with people from different cultures and backgrounds

Families’ needs are not static and change over time as their child ages. Coaching, mentoring, and follow-up support are key components of a family leadership program.