Nothing About Us Without Us
youth, family & community voice is essential to building A Brighter Future
Many of the key components that make up a community’s system of care were built with the priorities, values, preferences, and expertise of professionals—doctors, educators, social workers, and policymakers—at the center. In many cases, this leads to a disjointed, complicated, inflexible system that struggles to meet the needs of the community it seeks to support.
In recent years, the advocacy of individuals with lived experience has created opportunities to realize the individual and collective benefits of designing programs, services, and organizations with lived experience at the heart. This shift from valuing professional expertise over individual experiences to promoting partnership between professionals and people with lived experience is not always graceful or easy. But it is essential to building a system that improves outcomes for individuals, families, and communities.
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A system of care is a network of services, supports, and people that work together to help children, youth, families, and community members get the help they need. It’s not just one program or agency—it’s all the different pieces of a community that connect to support well-being.
Examples of components in a system of care include:
Schools and educational programs that provide learning support, counseling, and social-emotional programs.
Health care providers such as doctors, pediatricians, mental health counselors, and clinics.
Social services agencies that offer food assistance, housing support, or family services.
Community organizations and nonprofits that run after-school programs, mentorships, or youth leadership initiatives.
Faith-based groups that provide spiritual support, community connection, or volunteer programs.
Local government programs that coordinate child welfare, juvenile justice, or public health initiatives.
A strong system of care works best when these different parts communicate and collaborate, so people can navigate services more easily and get the right support at the right time.
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Lived experience is the first-hand knowledge and insight people gain from actually going through a situation, challenge, or service system. It’s about what someone has personally felt, seen, or learned, which gives them a perspective that professionals alone may not have.
Examples of lived experience include:
A parent sharing what it’s like to navigate special education services for their child.
A young person describing their experience with mental health counseling or peer support programs.
A neighbor talking about the challenges of accessing health care or housing in their neighborhood.
An community member who has experienced incarceration explaining what supports help people successfully re-enter society.
People with lived experience bring unique understanding to problem-solving, program design, and policy decisions, helping systems better meet the needs of those they serve.
Why Centering Lived Experience Strengthens Our System of Care
When the voices of people who actually participate in our community’s programs and services guide decision-making, the system becomes more responsive, easier to navigate, and more effective in meeting individual and community needs. Research shows that elevating lived experience increases trust and engagement and leads to better outcomes for everyone—community members and organizations alike! Benefits include:
More relevant services: Programs designed with lived experience reflect the real, daily needs of individuals, families, and communities, which boosts engagement and satisfaction. [1]
Stronger trust and relationships: People are more likely to access the community supports that are available to them when they feel like they’ve had a say in what those supports really look like. [1]
Better outcomes across the lifespan: Youth advisory boards, peer support programs, and participatory planning lead to improved health, educational, and social outcomes that last beyond childhood and adolescence into adulthood. [2]
Greater equity: Centering lived experience helps identify gaps and systemic barriers professionals may overlook, leading to fairer, more flexible, and more inclusive supports. [3]
Community empowerment: Involving community members helps to build strong, resilient, local leaders who continuously help to shape and improve our system of care over time. [4]
From Experience to Advocacy
People with lived experience are powerful change-makers. Whether you’re a young person, a caregiver, or a community member, your perspective helps organizations see what’s working and what’s not. Ways to use your voice:
Join community groups or committees at your local schools, social service agencies, or other community programs to share your perspective and advocate for the kinds of supports that are most meaningful to you. (Attending an OCOF Community Partners Meeting is a great way to start!)
Participate in surveys, focus groups, or town halls to give feedback on services you use, what has worked well, and what needs improvement.
Tell your story to decision-makers—sharing real experiences helps policymakers understand the human impact behind statistics. (You can reach out to OCOF to share your story here!)
Become a peer mentor or advocate to support others navigating similar challenges. Being a mentor or advocate doesn’t mean you have to have life all figured out—just providing someone who is a little earlier on in their own journey the opportunity to connect with someone who has been there can make a big difference!
Collaborate on research or evaluation projects to co-create better solutions to the challenges you (and others like you) face every day. Local governments, colleges and universities, nonprofit organizations and foundations often conduct community needs assessments or research projects and need to hear from people with lived experience like you!
Build skills in self-advocacy and leadership through training offered by nonprofits, advocacy groups, or your local system of care partners. This can also be a great way to connect with other people with lived experience, too!
A Brighter Future—For All of Us
When we value lived experience alongside professional expertise and focus on genuine partnership between community members and service providers, we create systems that truly serve the people they’re meant to support. Everyone benefits—children, youth, families, and the broader community. Even the community organizations themselves! We can build a brighter, more responsive, more equitable future for our community, but we cannot do it without you.
Learn More: Tools and Resources for Centering Lived Experience
What Is Lived Experience? (ASPE)
This infographic defines lived experience, explains why it matters for health and human services, and outlines principles for respectful engagement of people with lived experience.
Centering Lived Expertise (CSG Justice Center)
A practical guide to meaningfully elevating the voices of people directly impacted by behavioral health and criminal justice systems, including tips on advisory councils, leadership development, and equitable compensation.
Do You Know the Layers of Self-Advocacy? (NAMI)
An easy-to-read overview of self-advocacy at different levels—individual, community, and policy—and why each level matters for change.
The Power of Self-Advocacy: Finding Your Voice and Empowering Others (NEARC)
Highlights how developing self-advocacy skills not only improves your own outcomes but also inspires and empowers others in your community.
[1] CSG Justice Center (2024). Centering lived expertise: How to meaningfully elevate the voices of people directly impacted by the criminal justice and behavioral health systems. https://csgjusticecenter.org/wp-content/uploads/2024/05/Centering-Lived-Expertise_508.pdf
[2] Journal of Adolescent Health. (2024). Mixed-methods evaluation of a community youth advisory board. Journal of Adolescent Health, 74(6), 756–764. https://www.jahonline.org/article/S1054-139X%2824%2900632-3/fulltext
[3] ASPE (2023). What is lived experience? U.S. Department of Health & Human Services, Office of the Assistant Secretary for Planning and Evaluation. https://aspe.hhs.gov/sites/default/files/documents/d111ec032c54d2a01e5209a792f99629/What-is-lived-experience.pdf
[4] National Alliance on Mental Illness (NAMI). (n.d.). Do you know the layers of self-advocacy? https://www.nami.org/individual-rights-responsibilities/do-you-know-the-layers-of-self-advocacy/
