People with Lived Experience

A key attribute of successful engagement is providing support to reinforce the experience of engagement and reduce disparities between people with lived experience and those representing an organization or program.

Logistics

Things a program pays or provides

• Childcare
• Compensation for their expertise and time
• Mileage reimbursement / public transportation pass
• Remote access / Internet access / Broadband
• Email/Outlook account
• A location that is accessible and has good parking available
• Headphones & Cameras

Scheduling

• Start by asking people with lived experience about their availability.
• Consider meeting times in the early morning, over the lunch hour, evenings, or weekends.
• Identify a clear start time and end time and honor that decision

Communication

• Determine why people with lived experience are at the table – to share their story, participate as an
  equal member, just listen, provide feedback later, etc.?
• Offer mentorship and support for people with lived experience to learn how to best communicate their
  expertise.
• Meet with community members 15-30 minutes prior to the meeting to orient them to the
  discussions likely to take place and answer any questions they may have.
• Ask people with lived experience to contribute to the agenda. If you don't ask, their concerns and
  priorities may not be addressed.
• Offer appropriate (non-jargon-y) background information on the topic.
• Include everyone on all communications related to the project.
• Provide an agenda and documents a week in advance to any meeting.
• Designate consistent team member connectors to support people with lived experience. Make sure the people with lived experience know how to connect with them before, during, and after the meetings.

Comparable Compensation

For some people with lived experience, it is best to bring them on staff as a paid consultant. For others, they may either not want that level of commitment or financial reimbursement may impact other benefits. There are many ways to acknowledge and be reciprocal with people who have lived experience – ask them what works best.

Small acts of kindness:

• Remember a participant's name and use it when you greet them.
• Say ‘thank you’ often.
• Be interested in others' personal lives and share your story too.
• Celebrate everyone's birthdays.
• Send heartfelt, personalized thank-you notes.
• Give holiday gifts, other than cash or gift card equivalents, with a low fair market value, such as an ornament.
• At meetings, offer occasional snacks (coffee, fruit, candy).

For an individual:

• Offer to write letters of recommendation for school or future employers.
• Encourage volunteers to include their work with your organization on their resume.
• As appropriate, nominate volunteers for community awards and recognition.
• Offer plaques or similar mementos honoring their service.

For everyone:

• Use special days e.g., ‘Volunteers Week’ or ‘Make a Difference Day’ to publicize their work and the time put into your projects.
• Annually organize a social event, outing, or party to say thank you.
• Post appreciation photos and videos highlighting volunteers on your organization’s social media site (get permission first).
• Write newspaper articles about volunteers’ group achievements.
• Celebrate major achievements, perhaps with an award ceremony to which you invite prominent local people.
• Create and distribute a volunteer scrapbook.
• Mention the effort put in by your volunteers in any newspaper or radio coverage.

Linking to the MCH Leadership Competencies. Understanding how to support 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.

• 8S1: Solicit and implement input from people with lived experience in the design and delivery of clinical or public health services, program planning, materials development, program activities, and evaluation. Also, compensate participants as appropriate for such services.
• 8S5: Celebrate individual and family diversity and provide an open and accepting environment
• 8S9: Assist health care professionals, organizations, and health plans to develop, implement, and evaluate models of family-professional partnerships and direct partnerships with self-advocates.

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.

• Create Change Through Lived Experience: The Whole Advocate™ Model | The Advocacy Exchange. Year Developed: 2022. Source: Gryt Health. Presenter(s): Tim Cage, John Capecci, and Kate Callan. Type: Webinar. Level: Introductory. Length: 83 minutes.
• Consumer Advisory Committees: Recruiting, Training, and Retaining Members for Engagement. Year Developed: 2016. Source: Resources for Integrated Care. Presenter(s): Jacqueline Dowdy; Serena Simeone; Margo Michaels; Rosa Palacios (Moderator) . Type: Webinar Archive. Level: Intermediate. Length: 71 minutes.
• Missing Voices: Listening to People with Lived Experience to Create a More Equitable and Effective Pandemic Response. Year Developed: 2021. Source: Evidence Exchange Network. Presenter(s): Christina Foisy, Jase Watford, Lisa Frys, and Sandi Bell. Type: Panel Discussion. Level: Introductory. Length: 57 minutes.
• Listen, Engage, and Reflect: How to Authentically and Respectfully Engage Individuals With Lived Experience in Storytelling Practices. Year Developed: 2022. Source: Child Welfare Capacity Building Collaborative. Presenter(s): Huyanna Clearwater, Jeremiah Donier, Alex Gaither, Michaela Guthrie, Marcella Middleton, Keri Richmond, and Dakota Roundtree-Swain. Type: Webinar. Level: Introductory. Length: 45 minutes.