Family Run Organizations

Family-run organizations (FROs) are family-led, 501 (C )(3) non-profit organizations dedicated to supporting families who are caring for children, youth and young adults with social, emotional, substance use or multi-systems challenges – and the agencies that serve them. They are governed and guided by the lived experience* of families.

Family-run organizations encompass the collective lived experience of families in their states and communities. They are specialty providers, each as unique as the families they serve.

The foundation for being a family-run organization consists of four essential elements:

Mission: It is dedicated to supporting families caring for a child or youth with social, emotional, substance use or multi system challenges.
Governance: The board of the organization is comprised of at least 50% family members with “lived experience”
Personnel: The Executive Director/CEO and the majority of staff members providing support are family members with lived experience.
Family voice: The organization promotes and advances family voice at all levels of the organization and within systems that serve children, youth and families.

Models of Family-Run Organizations

The structure of the organization is often a result of a combination of factors. While each family-run organization is unique, four major state structures have evolved over the last few decades. These are the Affiliate Model, Umbrella Model, Central Model, and Advocacy Model. The following pages briefly describe each of these structures. Because the families in your area may have various needs, it can be confusing to decide what to offer and the infrastructure that will best support your choice. It is important to remember that you may choose a model now, but it could change in the future. Read Here

What do family-run organizations do?

FROs provide a variety of services and supports to help families navigate complex service systems, access necessary resources, and develop the knowledge and skills they need to improve their lives and the lives of their children. To ensure that services and supports meet the needs of youth and families, family-run organizations play a wide range of pivotal roles in preparing and supporting families to participate in the service, agency and policy arenas. Examples include providing peer support and navigation for families and youth, delivering training and workforce development for professionals across child-serving systems, participating in continuous quality improvement processes, serving as members of care coordination teams, and informing public policy decisions. Watch the videos below to learn more about some of their work.

A 2019 survey of family-run organizations conducted by FREDLA showed that:

100%

provide one-to-one support, training, and information and referral services for families

80%

are involved in public policy analysis and advocacy

86%

provide training for child-serving professionals

45%

host Youth MOVE Chapters or programs for youth

What is the added value of a partnership with a family-run organization?

Partnerships with family run organizations can help families, state and federal policy makers, managed care organizations and providers achieve their shared goals of improving services and achieving positive outcomes for children, youth, young adults and their families.