People with Lived Experience

Self-determination is the process by which a person controls their own life. They set their own goals and can pick and choose why, when, and where to share their lived experiences to help redesign systems of care.

People with lived experience have the right to say “No” without fear of retribution or a change in their services or supports. Programs must respect the boundaries of what a community member can offer. Provide a graceful way for people with lived experience to decline the opportunity.

People with lived experience must be able to share experiences, especially negative ones, without having to worry about retribution or changes in their services.

Life happens to everyone and circumstances change. It's important to understand that not everyone, even staff, may not be able to participate for the duration of a project. Thank them for their contributions to date and wish them well.

Linking to the MCH Leadership Competencies. Understanding self determination of 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.

• 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.

• 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.