People with Lived Experience

Once a group is gathered, the group creates the purpose moving forward. Everyone can learn from others and when this is a shared understanding then more creativity is fostered.

The Agenda:

• Create opportunities for people who have lived experience to lead the process and create the agenda.
• Review the agenda prior to a meeting with a small group that includes community representatives.
• Share the process about how to get time on the agenda or who to talk with.
• Have five minutes at the beginning or the end of the meeting for additional items or sharing thoughts or ideas.
• Recognize the importance of the issues for the people with lived experience and have the agenda prioritize those issues.
• Review and confirm mutually agreed upon “next steps” and “to do” items, especially if they have been assigned to particular individuals, before concluding the meeting.
• Set the next agenda at the end of the current meeting, including the date and time.
• Request agenda items a few weeks in advance of the meeting.

Behavior:

• Once a group has made a decision, honor that decision and see what you and others can learn from making that decision, even and especially if it is not the way you would have chosen.
• Notice when you or others use ‘either/or’ language and make time to come up with more than two alternatives. When you stop after two ideas have been offered, you miss out on the third or fourth idea people were thinking about.
• When a sense of urgency arises, slow down and encourage people to take a pause, a breath, restate the goal, and dive deeper into alternatives.
• Acknowledge that collaboration takes more time, particularly at the front end and yields a better result with higher buy-in and higher ability to take shared risks.
• Recognize the power dynamics in the situation and respond thoughtfully.
• Welcome discomfort and learn to sit with discomfort before responding or acting.
• Leave rank and egos at the door. Only use first names and not titles.
• Share group agreements or norms, avoid office talk, and avoid acronyms.
• Include everyone in the process.

Linking to the MCH Leadership Competencies. Understanding the collaborative process as related to PWLE is a key component of the skills section of the MCH Leadership Competencies. Click the links below to access trainings that support the related sub-competencies.

• 8S6: Collaborate with organizations that are led by people with lived experience to build and deepen involvement across all MCH programs.
• 8S7 Use feedback from people with lived experience, and community members, obtained through focus groups, surveys, community advisory boards, and other mechanisms as part of the project's continuous quality improvement efforts. Monitor and assess the program overall for effectiveness of partnerships between professionals and people with lived experience.
• 8S8 Ensure that perspectives from people with lived experience are actively informing the development, implementation, and critical evaluation of MCH research, clinical practice, programs, and policies.

Implementation. Remember, the key to effective partnerships with PWLE:

• Shared decision making, involving self-advocates and/or the family, in planning and implementing activities.
• Addressing the priorities of people with lived experience using a strengths-based approach.
• Recognizing the agency of self-advocates in decision-making as they approach transition age, and across the lifespan.
• Connecting people with lived experience to needed services.
• Acknowledging that the effects of the SDOH, and broader systems of care, greatly impact individuals with special health care needs and developmental disabilities.

• Collaborating Across Cultures. Year Developed: 2017. Source: ASA Community of Applied Statisticians. Presenter(s): Charisse Kosova, M.Ad.Ed.. Type: Webinar Archive. Level: Intermediate Advanced. Length: 62 minutes.
• Collaborative Teams That Work. Year Developed: 2020. Source: Hawker Brownlow Education. Presenter(s): Gavin Grift, and Colin Sloper. Type: Webinar. Level: Introductory. Length: 62 minutes.
• Collaboration and Action to Improve Child Health Systems – A Toolkit for State Leaders. Year Developed: 2011. Source: U.S. Department of Health and Human Services. Presenter(s): n.a.. Type: n.a.. Level: Advanced. Length: n.a.
• Choosing a Virtual Collaboration Tool - Which is Best?. Year Developed: 2021. Source: Cat Mulvihill. Presenter: Cat Mulvihill. Type: Webinar. Level: Introductory. Length: 36 minutes.
  Annotation: Today is all about choosing a virtual collaboration tool. I'll share the ones I've tried and what you should consider when choosing a tool for virtual collaboration.
• SOC Expansion Leadership Learning Community - Collaboration in System of Care Expansion: How Do You Know?. Year Developed: 2017. Source: Substance Abuse and Mental Health Services Administration. Presenter(s): Elizabeth Waetzig, Beth Strohl & Denise Sulzbach. Type: n.a.. Level: Advanced Intermediate. Length: 90 minutes.
• Creating Inclusive & Anti-Ableist Triage Policies. Year Developed: 2023. Source: Disability Rights New York. Presenter(s): Laura Guidry-Grimes, Katie Savin, and David Whalen. Type: Webinar. Level: Introductory. Length: 60 minutes.
• Authentic Engagement: People with Lived Expertise Shaping Homeless Programs and Policies. Year Developed: 2023. Source: Community Action Partnership. Presenter(s): Josh Johnson, Samantha Wood, La’Toya Cooper, and Jon DeCarmine. Type: Webinar. Level: Introductory. Length: 60 minutes.
• Collaboration and the Early Years: Exploring the Benefits and Challenges of Integrated Working. Year Developed: 2022. Source: Anna Freud National Center for Children and Families. Presenter(s): Marvyn Harrison, Claudia Coussins, Sanjana Jio, and Abigail Wright. Type: Panel Discussion. Level: Introductory. Length: 90 minutes.
• Health Equity in Action Summit – Collaborating to Improve Maternal and Child Health Outcomes. Year Developed: 2022. Source: Pfizer. Presenter(s): Jamila Taylor, Angela Aina, Brisa Urquieta de Hernandez, and Jamila Perritt. Type: Conference Panel Discussion. Level: Introductory. Length: 55 minutes.
• Leveraging Feedback in Community Engagement. Year Developed: 2019. Source: Switchboard TA. Presenter(s): Brianne Casey, and Rebecca Mulqueen. Type: Webinar. Level: Introductory. Length: 60 minutes.
• Intro to Continuous Quality Improvement. Year Developed: 2020. Source: Community Action Partnership. Presenter(s): Barbara Mooney, and Courtney Kohler. Type: Webinar. Level: Introductory. Length: 30 minutes.