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Engaging Lived Experience Toolkit

SCALE Toolkit for Engaging Community Members with Lived Experience

Introduction

Partnership and collaboration with community residents with lived experience was one of the most effective strategies, according to the SCALE 1.0 communities. Bringing community residents with lived experience into the work at all levels - and in particular, into the leadership level -  brings wonderful depth, growth and discoveries. 

This toolkit was built by SCALE communities, faculty, coaches, the evaluation and implementation teams.  We worked  to identify the key steps, states, tips and resources needed to engage community residents with lived experience in any level of a community's work, including the community champions working at the leadership level.   

You might notice that the toolkit suggests strategies that are useful for the team as a whole, as well as for community residents with lived experience. This is deliberate;  any group that integrates people from different backgrounds, from people used to conference rooms to people used to kitchen tables, needs to respect and support every single member. In growing our skills to support people newest to the work, we also grow the skills and behaviors needed to bring people into work, to set shared goals, to listen and value each other's contribution, manage different perspectives, opinions and priorities, and to come to shared decisions and plans.

What is lived experience?

  • Expertise that doesn't come from training or formal education.
  • Knowledge from an experience in a person's past or present with an issue or challenge.
  • People with lived experience know a system, process or issue from the perspective of those affected, or trying to engage with a resource.
  • They know what works, what doesn't work, and what resources (formal or informal) are available.
  • They know what's needed to make things better.

This toolkit contains

  1. An overview of what engaging with lived experience looks like in SCALE. View our slide deck to introduce you to the concept.
  2. Five key concepts to get you started. (below!)
  3. A path, or steps for engaging community members with lived experience, paired with a timeline for engaging the community.
  4. Various stories and videos about engaging with lived experience, written by SCALE communities, which you will find throughout the toolkit.

5 Things You Need to Know about Co-design with People with Lived Experience

Engaging people with lived experience in co-design is a challenging, joyful and deeply rewarding opportunity to change how we work, as well as outcomes. It can feel intimidating, but so is anything that's really worthwhile. Below are some top tips, identified by SCALE communities, to you help you get started. Don't aim for perfection; just start somewhere. Start wherever you are, whether you are just beginning or are already collaborating deeply with the community and residents with lived experience. Value lived experience before it is present, celebrate unexpected learning from the community, and embrace the challenge as an unparalleled opportunity to bring about the change that is needed.


1. Build change with trust and relationships.

Trust and relationships are the foundation of all of our work. It's so simple to get started;  just have a conversation with someone. You will be surprised at what they share with you, whether it's over a kitchen table, a park bench, or a shared meal.

Building trust and rapport takes time, but it's worth it! Existing relationships with community residents, organizations, community leaders, existing partnerships, and those trusted by the community will help you recruit. Then, take the time to build trust and rapport with the community residents who join your team. It takes time for folks who are not used to being in the room - let alone at the same table with other folks - to get comfortable.

2. Integration is a co-designed process: one size does not fit all.

After recruiting a community resident with lived experience, sit down and have a conversation with them about what they bring to the work, what they can do, and what they feel ready to learn.

  1. Lay out expectations and hopes: be clear about your expectations, share your hopes. Ask about theirs. Working with a your team should have value for them- aside from compensation- so think about how this work fits with their hopes, by growing potential job and education skills, learning to advocate for one's self, etc.
  2. Discuss support: for any need you cannot meet, problem solve with them to work around it. Be adaptable, flexible to give everyone what they need, so that they can bring their skills and knowledge to the work. (If we are not using an equity approach in the way we work, we cannot build programs that address equity!). Common needs include: cell phones, internet, transportation, child-care, etc. Ask what they need to do this job well; offer a stipend, but also know what your limits are.
  3. Model the approach: model how we work by co-designing the role with the community resident with lived experience. Use this opportunity to take an equity-oriented approach, by asking what people need to engage with the team.  Collaboratively problem solve to make it possible for them to engage in the work as fully as possible.
  4. Rinse and repeat: periodically reconsider their role, and ask them what kind of work they are able to do, and what they are ready to step into.

3. Always ask. Assume nothing.

SCALE leadership groups are made up of people with different perspectives, skills and knowledge. We make this work by being aware of our differences, avoiding assumptions, and continually asking questions and looking to learn.  Questions are the antidote to the assumptions that drive our expectations for what is possible, and our ability to include everyone in co-design. Below are three questions essential to collaboration.

  1. 'Who is most affected by this challenge?' Whose life will most be impacted by our work? That's who you need to engage! To make real, effective change, we need to change the way that we do things. That means moving beyond surveys and consultation, to bringing people with lived experience into the room, and working together.
  2. 'Which voice is not heard?' Who do we need at the table? Asking this question keeps us from assuming that we know everything we need to know, and instead gives us a chance to learn about resources in the community, or potential partners in the work. It also avoids the trap of assuming that one or two people's experience represents everyone's experience with an issue.
  3. 'What do people have, need, or are ready to grow into?' Invite people to define themselves, their skills and capacity for the work. Invite them to grow their capacity, and share their thoughts and needs along the way. Without asking, we risk assuming, rather than knowing what people can bring to the work. And, we miss opportunities to match our support to our teammates' needs, or help each other grow in ways we may not anticipate. Instead, turn to questions, and look to learn about the individual you are talking to. By asking about what community residents with lived experience bring and how they're ready to grow, your communities avoid tokenism. Instead, we approach each other as a whole, three dimensional, complex, changing persons.

4. Collaborate fully, humbly, and joyfully.

By collaborating deeply and joyfully, we make sure that the work being done fits with the needs and priorities of the community, coalition, and those with lived experience with the issue.

Start by learning from the community, and approaching the community as a resource. Recognize and respect what community residents with lived experience can bring to the table, and celebrate that - and each member of the team. If we knew everything that we need to know, we’d have solved these problems already.  Community residents bring in new information, insights and perspectives - they are a game changer!

Make your collaboration deep by making it possible for people with varying levels of capacity and skills to work with you. Open the doors, and offer opportunities to engage at all levels by making sure that community members with lived experience have a role in all the levels of work, so that there are many voices being heard, and hands at work.

5. Prepare for, nourish and celebrate growth.

Make sure that community residents with lived experience on SCALE teams have opportunities to learn and grow as individuals, and as leaders in this work. Think about who you are recruiting and where they are in terms of personal stability; anticipate changes throughout and make sure if people need to leave they can without shame or embarrassment. Continually grow your engagement with and the capacity of community residents with lived experience by engaging people at all levels of the work; when one steps up, shifts to a different part of the work, or steps back, another can step in.

Many thanks to...

Authors

Ziva Mann, Elizabeth McDermott, Kymberly Byrd, Somava Stout, Sarah Callender, Jody Anderson, Jonathan P. Scaccia, Aimee Budnik, Robyn Bussey, Will Douglas, Seth Fritsch, Ananya Moorthy, Fran Mullin, Esther Munene, Jana Pohorelsky, Mayra Serrano, Denise Smith, Shemekka Ebony Coleman


Story Contributions

Jody Anderson, Loretta Brown, Aimee Budnik, Robyn Bussey, Will Douglas, Bernadette Harding, Lena Hatchett, Esther Munene, Carlee Rosen


Video Contributions

Natanya Behrman, Marie Schall, Andrew Martin, Aaron De’Angelo Knuckles, Shemekka Ebony Coleman


Contributors and Feedback

Egan Ansorge, Catherine Craig, Michael Denning, Jenny Hudson, Cory Kendrick, Gabriel Lara, George McAdoo, Scott McAdoo, Veronica Rotich, Nate Siggers, Brandee West


All of the community champions, and especially the CHILA 4 Community Champion design team who set up all of the strategies that we used for collecting data at CHILA 4

Shanika Blanton, Loretta Brown, Tina Brown, Enrique Cardiel, Susan Flanagan, Clarence Hill, Mamadee Sesay, Marie Schall, Laura Brennan

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