Lived Experience As Expertise

Individuals with first-hand experience often have ideas and solutions but are not always positioned to influence outcomes. In this series, we discuss how philanthropy is uniquely positioned to acknowledge institutional oppression and to shift course, center equity and counter oppression,enable understanding and healing, and drive inclusive solutions. This monthly four-part series covers key methods, including: 

  1. Personal Interviews: With a guiding principle of “just listen,” we interviewed shelter residents to create programmatic solutions that vastly improved healthcare access for New Yorkers staying in the City’s shelter system.    
  2. Focus Groups: In Los Angeles, focus groups engaged people with lived experience as partners. Their input resulted in better strategies to reduce homelessness, especially among marginalized communities.   
  3. Lived Expertise Partnership: Prioritizing first-hand experience, we teamed with a professional with lived experience to address racial justice and criminal legal reform in New York.   
  4. Inclusive Data Integration / Bayesian Analytics: Recognizing the importance of qualitative data and community knowledge to center equity and guide inclusive decision making, we engaged diverse voices to center racial equity in a research design framework.    

Read on as we encourage you to consider how you guide your philanthropic approach.  


Lived Experience As Expertise: Leveraging Focus Groups to Create a More Inclusive Strategy  

Who we consider an expert and why influences funding allocations, policy design, and service implementation. Philanthropy has built a common practice of interviewing grantees, researchers, and other experts as they develop strategies. Only a handful include lived expertise as a source of knowledge. There is great opportunity to include and center the perspectives of people living the issue, as they have learned to navigate the systems themselves. As one example, a team at Redstone facilitated virtual focus groups with experts who have experienced homelessness in Los Angeles to highlight and incorporate their perspectives. 

The focus groups created a path to include the voices of those most impacted and opened the door for ongoing engagement and relationship. Through this work, our Redstone team devised accessible and intentional approaches to incorporate lived expertise into strategy, an important first step toward weaving that expertise into the fabric of philanthropic efforts. 

“We need different leadership – those who are making decisions – to come together in a room and share what’s working in their respective cities. Then we figure out the best strategies together and go from there.”

CONTEXT IN LOS ANGELES 

 At the start of 2020 in Los Angeles County, more than 66,000 people experienced homelessness. Over 70% of those Angelenos experienced unsheltered homelessness, meaning they were living on the streets, in vehicles, in abandoned buildings, or other locations. The issue has persisted through the pandemic. The complex landscape of local governments, public agencies, and service providers lack coordination and alignment toward the goal of getting these Angelenos housed. 

 The Housing and Homelessness Action Team at the Committee for a Greater Los Angeles (CGLA) has been working to recalibrate the governance structure of the region to drive toward a more coordinated and strategic approach among the State, County of Los Angeles, cities, and the service providers responsible for responding to the homelessness crisis. CGLA commissioned Redstone to help develop its action plan – the specific steps it would take to improve homelessness governance in Los Angeles. As a part of developing that plan, we sought to create meaningful engagement with those who had experienced homelessness because we believe they had valuable insight to both the problems of and solutions for the system. We partnered with Ann English at the Corporation for Supportive Housing (CSH) to run focus groups of people who had experienced homelessness to improve the strategies CGLA would pursue. The voices of those most impacted by poor homelessness governance improved our strategy development process and demonstrated the power of using focus groups to center lived expertise. 

FOCUS GROUP DESIGN 

People who experience homelessness are not a monolith – they lead distinct lives before, during, and after they connect to permanent housing.  With this is mind, we first identified key questions and the types of lived expertise that would raise unique and challenging perspectives. We worked with CGLA and community partners to identify topics and specific questions to ask (e.g., what is the impact of governance challenges on those experiencing homelessness, what are bright spots and challenges in homeless outreach and rehousing, and how can communications build a more robust community of advocates) to inform the recruitment step.  

We then worked with CSH to refine the questions and identify the types of expertise needed. CSH is a trusted partner in the field and has invested significant time and resources into building relationships with unhoused and formerly unhoused Angelenos (e.g., through the Speak Up! program).

Given the questions at hand, we recruited a diverse set of participants that had experienced homelessness in Los Angeles County and were housed at the time of the focus groups. Many of them also interacted with the system as advocates, case managers, and advisors to various organizations and agencies, which contributed nuanced perspectives that were invaluable to the process.  

Finally, as we prepared for the sessions we coordinated with participants and community organizations about compensation for the groups. We worked with the Inner City Law Center to discuss best practices for compensation and ensure that payments would not impact any individual’s eligibility for public benefits. Implementing these simple best practices in the focus group design and recruitment steps helped to launch a process that prioritized accessibility and equity.   

CREATING A TRUST-BASED SPACE TO SHARE INSIGHTS 

The steps taken ahead of the focus groups built a strong foundation for rich discussions. First, the Redstone team hired two co-consultants with lived expertise to inform the focus group design and co-facilitate the conversation. Amiyoko Shabazz and Jon Christian played a crucial role in preparing participants, deepening engagement during the focus groups, and synthesizing the results. 

Led by Ann English, Senior Program Manager at CSH, the team then moderated preparation sessions with each of the focus groups to give individuals an opportunity to meet one another, ask any context questions, and share some of their experiences in a low-stakes environment. While not a regular practice in traditional focus groups, the preparation sessions created a trust-based space conducive for sharing more sensitive stories. Context questions and clarifications about the project and homelessness governance at large made the engagement more accessible. Intentionally cultivating this space enabled participants to quickly dive into the diverse set of topics and share their insights and recommendations. 

Finally, each focus group started with a conversation about norms to establish a foundation for how to engage one another and communicate with various perspectives and experiences of the system. The discussions did not look for agreement – they sought to surface perspectives on key challenges and potential solutions.   

“The joining and alignment of the system is what is so important. I don’t understand why everyone is in the same game, but they don’t act like partners. They act like competition, and that doesn’t help solve homelessness.”

SETTING EXPECTATIONS ON NEXT STEPS AND FOLLOW THROUGH 

As the focus groups concluded, participants were vocal about wanting to know how their insights would be used and what opportunities there might be for ongoing engagement. Far too often people with lived expertise are asked to provide their insights in a one-off setting and do not get to see the changes that their insights create. The Redstone team clearly described how the insights would be synthesized into a set of recommendations for CGLA to then advocate for changes across the County. At participants’ request, we cited all the focus group participants by name in the final report. 

The CGLA Housing and Homelessness Action team incorporated many of the focus groups’ insights into their action plan, including:  

  1. Expanding access to more types of housing, and improving the services offered, is key to supporting individuals to connect and remain in permanent housing 
  2. Centralized leadership and a regional strategy are needed to ensure accountability to resolving homelessness 
  3. The various entities tasked with building housing and providing services need to be better coordinated 
  4. Compassionate case managers, navigators, and advocates, including those with lived expertise, have successfully navigated participants from street homelessness to stability and deserve ongoing investment 
  5. People who have experienced homelessness should have formal roles on the ground and in senior leadership across the system, given their expertise 
  6. An improved public narrative about people who experience homelessness can strengthen the ongoing and future efforts to combat homelessness in Los Angeles  

Armed with the knowledge of individuals with lived expertise, CGLA and its partners are hard at work coordinating a diverse coalition of advocates to take action on these recommendations and advance toward a more equitable and inclusive Los Angeles.

“…more money should be invested in those who are doing the footwork. You can’t house people from behind a computer.”


In the following months, watch for our additional strategies used in our Lived Experience As Expertise posts. In July we will share how a professional with lived experience helped inform our strategy. And in August we will show how Bayesian analytics integrate and elevate data sourced from community knowledge to drive meaningful and robust solutions.

    About the Authors
  • Noha Kikhia

    Noha partners with social sector leaders to launch initiatives and strategies that drive equity, improve access to services, and advance toward a more inclusive economy.

  • Anishta Khan

    Anishta’s background is in global health research, education consulting, and civic engagement, especially through arts empowerment.

  • Jason Blau

    Jason is honored to be a trusted partner to clients rising to the occasion for communities and the planet.