Family Data Leaders Advance States’ Efforts

Photo of family

Authors: Michelle Lewis, Thomas McGhee II, and Margo Smith

The success of Individuals with Disabilities Education Act (IDEA) Early Intervention (Part C) and Early Childhood Special Education (Part B 619) programs depends on leadership from representative families served by the programs. Family members are integral to state and local work. They help bring meaning and context to data and to the data analysis process. State Performance Plans (SPPs) and Annual Performance Reports (APRs) must include targets for each indicator that have been established with “broad stakeholder input”—including family members. For this input to be most effective, it is important that family members understand data and data use.

What is a “Family Data Leader”?
A Family Data Leader is an individual who can bring their family voice and experience along with a broad understanding of IDEA, data use, and systems building to inform Part C and Part B 619 program improvement. They are skilled data users who can analyze and apply Part C and Part B 619 data. They use their knowledge, skills, and experience to give feedback and join in decision-making.

Family Data Leadership Project

The DaSy Center is partnering with the Center for Parent Information and Resources (CPIR) on the Family Data Leadership Project. This project supports state and local Part C and Part B 619 programs by increasing family members’ data skills so they can meaningfully engage in discussions about state and local data. Fourteen parent centers in 13 states are using a shared curriculum to prepare family members to be Family Data Leaders who are ready to contribute their perspectives to data discussions within their communities about programs and systems that impact infants, toddlers, and preschoolers with disabilities.

An individual becomes a Family Data Leader by gaining a broad understanding of IDEA, of Part C and Part B 619 data and data use, and of systems building. They give feedback to state and local programs and inform decisions to support program improvement. Along with specific data skills, a Family Data Leader brings their personal perspective and lived experience—their voice—to partner with Part C and Part B 619 programs and improve services for children and families.

How To Include a Family Data Leader in Your Program

Here are five strategies and related practices you can use to involve Family Data Leaders in your Part C and Part B 619 program work.

  1. Know your community
    • Regularly revisit your demographics and dimensions of diversity.
    • Identify and connect regularly with community leaders, members, and organizations with whom to partner.
  2. Include diverse voices
    • Invite and seek different views.
    • Find and address barriers to including diverse perspectives.
    • Prioritize diverse and inclusive input.
    • Provide flexible ways to contribute.
  3. Build trust and respect
    • Be responsive and communicate regularly.
    • Take all ideas and recommendations seriously.
    • Respect competing demands and appreciate all levels of participation.
  4. Maintain support
    • Provide thoughtful and ongoing orientation, mentorship, and responsive support.
    • Explain why each person’s voice is essential to the work.
    • Provide compensation for time and expertise given.
    • Match each person’s interests and talents to activities.
    • Value each person’s perspectives and contributions.
  5. Celebrate
    • Highlight and share achievements, big and small.
    • Show appreciation.
    • Remember that any achievements would not be possible without each person’s experience, expertise, and voice.

Not Sure What to Do First? Start Here

Regularly reach out to Parent Centers

Make a plan to regularly connect with one or more Parent Centers. Even if a center is not in the Family Data Leaders Project, parent centers can identify and support families to work with you. Some are ready and eager to work with state agencies in this way. Ask Parent Centers how to best help with ongoing efforts to find and support families to be data leaders and/or participate in data conversations.

Find a Parent Center in your state or territory on this CPIR webpage or reach out to DaSy to learn more.

Look forward to ongoing work together

Multiple family voices at the table are essential. Family members will reveal unseen successes, barriers, issues, or problems. They will suggest and recommend improvements. They will define and celebrate successes. With well-supported and compensated Family Data Leaders with flexible opportunities for input, states and local programs can better meet goals with and for children and families. Don’t miss out on family members’ voices and expertise.

Resources for Ongoing Learning

DaSy Center Resources

More Resources

About the Authors

Photo: Michelle Lewis

Michelle Lewis, MEd, is a DaSy technical assistance consultant at New Hampshire Parent Information Center. Michelle is also the Center’s executive director. She is experienced in working at the state and the local levels, ensuring that requirements and intent of IDEA are met and that the program, school district, and family positions are heard. Michelle is a parent of two children, one with disabilities. She brings her knowledge and passion for families and systems to all of her work.

Photo: Thomas McGhee II

Thomas McGhee II is a DaSy technical assistance consultant at the Frank Porter Graham Child Development Institute located in the University of North Carolina at Chapel Hill. He provides technical support to Part C and Part B 619 coordinators in states promoting systems change. He supports states in general supervision and monitoring, and state accountability progress reporting data on family outcomes and other indicators. Thomas also works with the SSIP, DMS 2.0, transition, Family Data Leaders, and the accountability and quality improvement workgroups across DaSy.

Photo: Margo Smith

Margo Smith is a DaSy consultant providing communications and other support for DaSy TA products. She has a background in journalism, data visualization, and data use in early childhood care and education TA.


Published May 2023.